T3 Medication

[Annealise]

Are there endo's in the uk who will prescribe T3 medication on the basis of having all the symptoms of hypothyroidism but tests are of normal range?. Can you go for a trial anywhere? My levels must have dropped dramatically, to suddenly have all these symptoms but still in normal range. I honestly can't bear to go on another restrictive diet for the 20th time, months on end to not loose a 1lb after putting on weight at Christmas over 3 days. It's not normal to live with all the other symptoms either.

[bluebug]

Hi it will help others to help you if you post all your test results and ranges. You can do this by editing your post.

By this I mean

TSH

FT4

FT3

Vitamin B12

Folate

Vitamin D

Ferritin

Haemoglobin ( or haemoglobin estimate)

Also list the dose of levo you are on plus any other supplements and medication.

You can't go to an endo and say my results are "normal" please prescribe this you need to be able to point out what is the issue and why nothing else is wrong. If you are vitamin and/or iron deficient then you won't be absorbing levo properly. In addition the range for FT4 and TSH is so wide "normal" is meaningless.

[Annealise in reply to bluebug]

Will do - thanks bluebug.Re: the endo, could you please elaborate what you meant by ' why nothing else is wrong'? The symptoms speak for themselves really as an issue and no one seems willing to diagnose you as hypothyroid unless tests are conclusive.

Angela

[bluebug in reply to Annealise]

Doctors including endos work, particularly in the UK, on guidelines. Some of the guidelines are written in a way in my opinion that just save the NHS money.

In addition when they are trying to diagnose you they work on the process of elimination and also refer back to old medical records.

You admitted down below you were diagnosed with ME. Seeing that on your notes they are more likely to diagnose you again with ME then realise for example you have a vitamin B12 deficiency or another autoimmune disorder.

So get the tests done and when you have the results post them with the ranges. You may want to get a full blood count in addition to the tests mentioned as sometimes red cell, white cell and platelet counts can help indicate that something is wrong.

BTW There have been other posters on here who have reported having thyroid symptoms but their test results mean that no doctor would treat them for it. However communicating with a couple there is an indication they have issues with other hormones but getting treatment for those is hell especially if they are sex hormones and they aren't trying to get pregnant.

[silverfox7]

Yes I'm afraid 'normal' often isn't optimal for you though doctors assume it is ok. Often we need to be in at least the top half and much better in the top third or even top quarter other then TSH where we often feel better if it is low. If you haven't copies of your results then ask the GP. He can't refuse as they are your results and you are entitled to then. You also need the ranges as well and should always quote them when you post your results as they differ from lab to lab. Otherwise it is just guesswork and we can not give an accurate answer in some cases.

[Annealise in reply to silverfox7]

Very True! Why dont Dr's realise that it's actually possible for our optimal levels to drop and make us ill.... My copies of tests are from years ago - think the last ones were done in 1990. My current GP won't have records . I was wondering if it's a good idea to ' start from scratch' with this GP and say all these symptoms are recent and not mention the past. I don't think there are any newer tests than those I have already had though.

Thanks,

Angela

[bluebug in reply to Annealise]

Your current GP should have your medical records from childhood unless they are lost, you changed practices in the last 4 months or spent years abroad. I only know this because I had a nurse practitioner delved into my records from childhood and an older friend of mine was looking for records of her past operations. The GP won't have any hospital notes but will have letters that discharge you back to their care with instructions for further treatment.

You will however have to pay £50 to see them and the costs of photocopying them if you want copies, as per your rights under the Data Protection Act 1998.

If you do want to see them talk to your GPs receptionist then make a formal written request where you enclose payment. When you turn up to view them take a pen and notepad with you to write down the bits you are interested in.

[Starfish123]

I just wondered if you've had any thyroid antibodies blood tests? The most usual one they test for is TPO, that's what changed my diagnosis to confirmed autoimmune hypothyroidism.

[Annealise in reply to Starfish123]

Starfish, I had one test for Thyroid antibodies - it came back normal I - shall look it up to see which one it was.

Thanks,

Angela

[Katepots]

You could get private testing done bluehorizonmedicals then take to an endo (that's what I did) as I'm sure your results won't be normal!

What part of uk are you?

[Annealise in reply to Katepots]

Hi Katepots,

That's a good idea! It's finding a decent endo now that I live in Warwickshire as I just wouldn't know where to start. It would be wonderful to get 'a word of mouth' recommendation.' Although I would travel anywhere to have someone who genuinely believes in me.

Did your lab tests results come back in the normal range?

Angela

[Katepots in reply to Annealise]

THS had risen again so I've upped the NDT which seems to be working and antibodies still present so somewhere there's a missing link. Just read an article mistydog posted about oestrogen and Hashimotos which was very interesting as I have excess oestrogen so I'll work on that next!

Just fought off a flu bug in3 days when everyone else that had it was in bed so whatever I'm doing is definitely making me healthier even with an autoimmune disease!!

Link to article. They are advertising stuff too so take the interesting bits...

forefronthealth.com/hypothy...

[Katepots in reply to Annealise]

How near Birmingham are you?

thyroid-info.com/topdrs/uni...

[Annealise in reply to Katepots]

Not far... Thanks.

[Annealise in reply to Katepots]

Thanks for the list. I was so happy to read about the excellent Dr Skinner in Birmingham and was all set to make an appointment. To my dismay, i've found out he passed away a few years ago. 'Back to the drawing board'...

[Katepots in reply to Annealise]

He will have taught people there though so maybe worth ringing!

[Annealise in reply to Katepots]

I have tried Katepots - it is all closed down now. Feeling really despondant this week after getting my hopes up...

From all the comments I have read on here recently, it seems virtually impossible to get a GP to prescribe anything. I am going back next week to have my bloods redone after many years and take it from there... Will try and find the best info i can on here to show her and tell her I shall get NDT from Thailand if she wont help me.

[shaws Administrator]

Have you actually been diagnosed as being hypothyroid? Are you taking levothyroxine?

All blood tests for thyroid hormones have to be the very earliest possible, fasting (you can drink water). If on hormones you allow 24 hours gap between last dose and test and take afterwards.

Ask GP for a new test which should include TSH, T4, T3, Free T4, Free T3 and thyroid antibodies. Vitamin B12, Vit D, iron, ferritin and folate. Tell him you have been given advice from the NHS Choices for dysfunctions of the thyroid gland. He may not, or lab may not if TSH and T4 are in range. However, if you can afford a private blood test we have recommended labs and as doctors have no knowledge nowadays of clinical symptoms which have to be relieved we have to read and learn ourselves to be more knowledgeable.

Always get a print-out of your results for your own records and you can post for advice.

thyroiduk.org.uk/tuk/about_...

[Annealise in reply to shaws]

Hi Shaws

No, I have never been diagnosed as hypothyroid as my tests were inconclusive 30 years ago. I was 28 and in the prime of my life back then,very healthy and fit, played sports and had a great career. I suddenly contracted EBV and my Dr didn't diagnose me until I had returned to work after only a couple of weeks of being ill. I began to suffer hair, skin, weight and digestive problems along with severe exhaustion, and several other baffling symptoms and had to eventually had to give up my job. All this was life changing for me and I ended up severely depressed.

I was passed around 'from pillar to post to 10 different specialists for all of the individual symptoms and fobbed off by all of them as tests all came back normal. A gastroenterologist even suggested removing some of my intestine after none of the many laxatives prescribed for constipation were effective. I refused as I knew my own body and to me it all pointed to my hormones. I managed to get referred to a very good consultant at the London Royal Homeopathy hospital who diagnosed me as having ME. I was found to have vitamin / minerals and EPA deficiencies and very low ferritin and problems with absorbing them. It took a year to get my ferritin levels up to a reasonable standard and as soon as I stopped, I reverted back. I have had all those tests you mentioned apart from Vitamin D . The only below range hormone result found in hormone tests was my SBGH?. I was put on candida diets and finally managed to loose a bit of weight after 4 months for the first time in years. But every time I relaxed the diet my weight soared. Also spent a lot of money investing allergies at an Environmental hospital and through them I managed to obtain T4 which did nothing for me.

I began to study nutrition and read Biomedicine text books over the years before the advent of the internet and tried to help myself with diet and supplements. Over the years I delved in and out of trying to find a solution but found it best just to get on with my life. Now I have reached the menopause and it's a struggle dealing with my long term previous symptoms. I started doing research once again and think 'there may be light at the end of the tunnel', but I really can't face 'doing all those merry go rounds specialists again.

This is a wonderful site, that I have just joined. Thank you for all your replys. I will dig out my test results that I have kept and put them in my profile as suggested. I apologise for the lengthy response ,but I have never found a way to openly discuss this illness with anyone, apart from my husband. I hope with guidance from on here that I finally get somewhere now!

[shaws Administrator in reply to Annealise]

I myself had never been aware of a condition called hypothyroidism (neither did any of the professionals I saw and some were paid) and was in a similar boat to yourself but I'm now sailing along nicely

Your problem occurred around the time of the introduction of the blood tests and levothyroxine. Before that, since 1892 we were diagnosed upon clinical symptoms alone and given dessicated thyroid hormones. If our health improved, we stayed on NDT which was increased till we felt well. NDT is also called dessicated thyroid hormones and is made from pigs thyroid glands.

There has been a disaster for thousands of people world-wide since, ie. being undiagnosed/untreated/undertreated. This is a quote from a doctor who resigned from his association in order to keep treating/diagnosing patients and not having his licence removed which has happened to a few in the UK.

"ONE OF THE WORST DISASTERS in the history of medicine is the

endocrinology specialty’s modern guidelines for diagnosing and

treating patients whose bodies are under-regulated by thyroid

hormone. These guidelines and the beliefs they’re based on have

caused a worldwide public health crisis. It involves the chronic illness

of scores of millions of people and the premature deaths of

incalculable numbers more. Each year, billions of dollars are spent

for drugs intended to control patients’ chronic symptoms; the drugs

are largely ineffective and often induce adverse effects in the

patients. Researchers who fail to recognize that the cause of the

patients’ symptoms is under-regulation by thyroid hormone do

studies looking for other causes. Since they are blinded to the real

culprit, their fruitless efforts squander billions of research dollars."

He was also, before his death, an Adviser to TUK.

Another Doctor in the UK treated people as he was taught and was brought before the GMC quite a few times but was subborn and he was always dismissed as treating patients properly but some were 'after' him - as an example I should think - as he appeared about six times must have caused immense strain. He died of a stroke.

worldthyroidregister.com/Go...

[Annealise in reply to shaws]

That's good 'you are sailing along nicely' - so happy to hear there is hope.

Thanks for all that info.

The side effects I read for T3 were palpitations and sweats and people not aware of how to self medicate ( having to break tablets up). It made me think your heart was being affected....

Not taking T4 - took it years ago and it didn't do a thing for me.

Re the tests you informed me about; that a GP is able to do - did you mean that they won't do the folate etc until they have done the THS etc tests first and are out of range?

[shaws Administrator in reply to Annealise]

I think these 'effects' have been given by people who only want to prescribe levothyroxine and make up stories. If we took too much of levo or any thyroid hormones, we'd have the above side effects. I was in and out of A&E many times with palps before being diagnosed. Not one single professional ever did a blood test for hypo.

Eventually, after a first aider suggested hypo I got a test which confirmed a TSH of 100. On leveo I had forever palps but when switched to T3, I've had none since and feel well.

There's no need to split T3 tablets unless you are taking an inequal amount. I take one daily dose every day when I get up and, thankfully, I feel completely normal (husband might disagree ) When we take T3 it is absorbed quickly and enters the receptor cells (T4 is inactive and has to convert to T3). The effect of that one dose lasts between 1 to 3 days.

If you click on my name you can read my experience.

If GP hasn't done minerals/vitamins we can get these done at any time. Many have found they have some deficiencies and deficiencies can also cause symptoms.

[Annealise in reply to shaws]

That's interesting......

I will take a read of your experience. Apologies for putting mine in a topic instead of profile - just getting the hang of the site.

Didn't realise a GP can do those vitamins test for you etc .... I was previously refused up here and told to go back to my consultant at the London Royal Hospital where I had previously had them - a hundred years ago lol. Needless to say I didn't bother as so inconvenient with work etc.... I just self treated myself in the defiences diagnosed and hoped for the best.

[SlowDragon Administrator in reply to Annealise]

You really need to check for BOTH types of thyroid antibodies - especially as you have had EBV

hypothyroidmom.com/hashimot...

If you can not get GP to do these tests, then like many of us, you can get them done privately

thyroiduk.org.uk/tuk/testin...

Special offer at moment

thyroiduk.org.uk/medichecks

Usual advice on ALL thyroid tests, is to do early in morning, ideally before 9am. No food or drink beforehand (other than water) If you are taking Levo, then don't take it in 24 hours before (take straight after). This way your tests are always consistent, and it will show highest TSH, and as this is mainly all the medics decide dose on, best idea is to keep result as high as possible

If you have Hashimoto's then you may find adopting 100% gluten free diet can really help reduce symptoms, and may lower antibodies slowly over time too. Some also (or instead) find other foods may need avoiding, dairy, soya and nightshades (tomatoes, peppers, potatoes) being the common ones.You do not need to have ANY obvious gut issues, to still have poor nutrient absorption or low stomach acid or gluten or other food intolerance

[BadHare]

Hi Annealise,

I had secondary hypo symptoms for 40 years, all ignored in favour of blood tests. I was fat, & put on 3kg in 3 days if I ate more that 1,000 calories, & was constantly cold. Even when my tumour was diagnosed, they ignored the symptoms.

I've now been self-medicating for 18 months, with NDT & T3, which has been life changing. Wish I could've done so from my teens.

Mel

[Annealise in reply to BadHare]

Hi Mel I am so pleased to hear you have had a result. What is NDT please? I would love to try T3 but bit nervous to do so because of side effects I have read about, but I am getting desperate.

Angela

[shaws Administrator in reply to Annealise]

Levothyrixine didn't agree with me and am fine on T3 only. What side effects have you read about T3? NDT stands for dessicated thyroid hormones which are made from pigs or cows thyroid glands and saved people's lives from 1892 onwards as there was no treatment previous to this date. NDT has all the hormones a healthy gland would produce.

[Annealise in reply to BadHare]

Gosh Mel, you have to take both? How do you know what quantities to take?. I can't believe even with a tumour they ignored your symptoms!!!! - poor you!

I empathasise completely with you re: you wish you had been able to take this medication in your teens. Struggling on with symptoms for countless years is soul destroying.. The inward symptoms are bad enough but my appearance changed drastically overnight. I lost 50 per cent of my thick hair hair as well and had to go blonde to disguise the thinning , to enable me to work.

[BadHare in reply to Annealise]

I don't have to take both, I self medicate, so take as much as I need to feel warm, eat healthily & not be hungry all the time, & not ache all over with "fibromyalgia" which was really secondary hypothyroidism. The tumour was found by accident, but having read a lot

about the symptoms, it's something I had from the age of 14, if not

earlier. I went at 15 1/2 from a size 8 34B to a very fat size 12 36EE

in 6 months. Everyone thought I ate too much, & was like Kenny from

South Park with my coat on permanently, & suffered fatigue & depression.

Re dosage: I did the Barnes Basal Body Temperature Test for 4 months to establish how cold I was, then took a very low dose, initially ineffective due to taking it with food, HRT, iron & vitamin D, & eating soya at least twice a day. I increased by a 1/4 grain every two weeks until I got up to 1, which is the equivalent of 68mcg of T4. I then made myself ill again taking another brand which disagreed with me, before going back on to the one that worked. 1 grain was ok for a while, but my body needed more, so I increased to 2 grains, then added cheap OTC T3 which my friend brought me from Greece. 2 grains is about right for me, or 3 25mcg T3, or a combination of both. I take a little more T3 if I'm going to have a long or active day. I also monitor my heart rate daily. If it's weak or slow, I need more, if it's faster & seems too strong, I take less, my latest T3 batch seems stronger than the stuff I had last year. T3 has a short life, so is easier to alter each day, but my skin, especially lips & feet, are better on NDT.

[BadHare]

Hi Angela,

NDT is natural dessicated thyroid. Usually from pigs, but some brands are bovine. It was used prior to synthetic hormones being invented. It has the full range of THs that the human body makes.

I've had no negative side effects to T3, even when on T3 only.

My skin isses are reduced further with NDT, but it's more expensive, hence taking both.

I started with NDT, & took such a low dose, along with not taking it effectively, so it had little effect initially. If you took either type of TH, & increased gradually, you would know when to stop increasing by feeling better, or by monitoring your temperature & pulse. The body initially gets used to a low dose, then needs further increase till you find a daily dose that suits you.

Mel