Does anyone here have an underactive thyroid?

Ginaapple

Hi

Tried to download the book but the link would not let me. Are you a member of the TPA? It is a brilliant site and has loads of info on thyroid problems.

Gina

suzukibabe

I haven't had a chance to read all of the posts on this thread but the ones i have read have been very informative.

My DS2 was diagnosed with underactive thyroid in February- he's 7 months old but when he's older i will be able to explain more to him all about hypothyroidism thanks to this thread and the links on it.
His last blood test results were all up the chute but it was taken from his heel as they couldn't get a vein, his consultant isn't that worried about his result at the moment and she is personally going to take the next lot of blood.

shetur

"The British Thyroid Foundation has a far more sensible and balanced position on the use of Armour: www.btf-thyroid.org/main_frame/pages/armour_statement.htm[/quote]"

Does the Pharmacist even know what he is talking about? Has the Pharmacist actually had any experience using Armour thyroid, USP? Has the Pharmacist done any research and looked at the studies to enable him/her to decide for her/himself whether the BTF has a far more sensible and balanced position on the use of Armour?

Both the British Thyroid Association (BTA) and the BTF have statements on their respective websites about the use of natural thyroid extract (Armour Thyroid, USP) and synthetic thyroxine (T4) and liothyronine (T3) therapy. Many of their statements are misleading, and in parts incorrect, and their Armour statement is backed with only ONE reference and their T4/T3 combination therapy statement they backed with only 3 references. What everything boils down to, in both their statements, is that they are really trying to make everybody BELIEVE that synthetic thyroxine is the ONLY medication that is needed for every hypothyroid sufferer on this earth

Thyroid Patient Advocacy-UK www.tpa-uk.org.uk responded to the individual members of the Executive Committee of the BTA and BTF, and sent copies of this response to every NHS endocrinologist and every primary care trust, including several thyroid organisations and members of the Department of Health etc. The printing and postage was funded by members of TPA-UK forum, many of whom have had to leave paid employment because they are too sick to work - either because they have not been given a diagnosis (because their TFT's are within the reference interval) or they cannot regain their normal health on the NHS 'gold standard' medication using levothyroxine only.

Perhaps the Pharmacist would like to read the studies and research that show how misleading and in parts, incorrect, the BTA's and the BTF's statements are. The TPA-UK found almost 300 citations to back up their claims. Needless to say, that although the response from TPA to BTA was sent to them on 17th March 2008 asking them to update their statements accordingly, three months later, they have still not made the necessary corrections. Correct information therefore eludes the medical profession and the patient world in respect of the proper diagnosis and choice of treatment of hypothyroidism.

This is appalling, and it is the GP's, the endocrinologists and even, perhaps, the pharmacists who are coerced into discouraging their patients from having a trial of Armour Thyroid or synthetic T4/T3 combination therapy. They print out copies of the BTA Statements and when their patients ask for a trial, simply hand the copy to the patient saying "....this is the reason I will not recommend it..." - and they have failed to even check whether the information in the statement they are handing to their patient is correct or not. Shame on them!

Shame on them also, because the poor doctor, who is desperately wanting to help his patient regain his/her health, is terrified to go outside the mainstream diagnosing and treatment protocol in case they, like other doctors who have dared to, will be reported to the GMC with the threat of having their livelihood taken away from them. Come out of your corner Big Pharma....

You can read the responses to the BTA et al here:

http://www.tpa-uk.org.uk/resp_bta_armour.pdf and http://www.tpa-uk.org.uk/resp_bta_t4t3.pdf

I personally do not consider that the BTF has a far more balanced approach in the use of Armour thyroid - perhaps the readers of the responses to their statements will make up their own minds. I hold the BTA first, and second, the BTF responsible for the thousands of hypothyroid sufferers who remain ill, with many symptoms because they are being prescribed T4 only and being denied T3 and Armour Thyroid. There are many people who are unable to convert the inactive hormone T4 through the liver to the active hormone T3. It is T3 that makes the body (and brain) function. Those lucky enough to be able to convert, then thyroxine alone is fine, but PLEASE think about those sufferers who, for many reasons, can't.

Look on the many Internet thyroid forums where you will see thousands of stories from patients who changed from synthetic thyroxine to natural Armour thyroid (which contains ALL the thyroid hormones a normal body requires) who are now living full and healthy lives, able to contribute once more to their country's wealth, in many cases, relinquishing the need to rely on State Benefit handouts, intergrating once again with their families and society at large.

Contrary to what the Pharmacist says, the BTA and the BTF DO NOT have a far more sensible and balanced position on the use of Armour.

Sheila
Thyroid Patient Advocate
www.tpa-uk.org.uk

shetur

Hi Chrissy

Has your husband had his ferritin (stored iron) level tested. The reference range for men is somewhere in the region of 30 to 300 and his reading should be somewhere around the middle for him to feel well. If he has a very low ferritin, this can be a CAUSE of hypothyroidism, but in any case, with low ferritin his thyroid hormone replacement will not be able to be properly absorbed and he will not be getting the benefit he should from it. He would need to get this tested, and if low, to be prescribed elemental iron, such as Ferrous Sulphate 200mgs 3 x daily. Once his level has built up, his thyroxine should start to work better and he should in turn, start to feel much better.

Hypothyroidism causes constipation in many sufferers. If your husband needs iron, he must take it at least 3 to 4 hours away from his thyroxine, and it is best to take high doses of Vitamin C with his iron.

Sheila

moneysaving_pharmacist

Sheila, I find it hard to take an organisation seriously when their website opens with 'the NHS is killing us'. It is also easy to make a document look impressive by peppering it liberbally with references as few people have the time to investigate them all.

And as for the involvement of big pharma, thyroxine literally costs pennies so there's not much profit to be made there.

melbury

[

quote=moneysaving pharmacist;12465479]
And as for the involvement of big pharma, thyroxine literally costs pennies so there's not much profit to be made there.

Is that why we get free prescriptions because it is so cheap?:D

Have read that Armour thyroid tabs don't suit everyone. Surely the thyroxine must be pretty effective as so many people are on it. I concede that there may be the odd case where it doesn't help, but these must be few and far between. Also, from what I have read, it sounds a very complicated process actually getting the piggie pills - if indeed you can get a GP to prescribe them in the first place.

shetur

"Sheila, I find it hard to take an organisation seriously when their website opens with 'the NHS is killing us'. It is also easy to make a document look impressive by peppering it liberbally with references as few people have the time to investigate them all."

You, and sadly, others might find it hard to take an organisation seriously enough when its website does, as you state, open with "The NHS is Killing Us". Perhaps if you joined some of the Internet thyroid forums, you might realise the truth in this statement and read some of the messages where sufferers are screaming out to be listened to instead of being ignored by the NHS and told to lose weight, pull themselves together, take antidepressants, and many, to stop wasting their doctors' time and get a life (yes, this is true).

As far as your remark regarding how easy it is to make a document look "impressive" with "peppering it liberally with references - with few people having the time to investigate them all"..all I can say is, how wonderful it would be if doctors investigated just a few. After all, as professionals it is their solemn duty to keep themselves up to date with advances in medical science. This is a very unhelpful remark and goes to show the problems we hypothyroid sufferers have when, even a pharmacist can be so dismissive of research and studies which prove how wrong the NHS diagnosiong and treatment protocol is in regard to this disease, and how wrong the BTA and BTF are in their statements on THEIR websites, regarding the treatment of hypothyroidism. How can you take their websites seriously?

If you find it hard to take our website seriously because it does open with "The NHS is Killing Us" - this is YOUR problem, but as I have indicated above, there are many sufferers out here who would endorse this statement emphatically. I have daily contact from sufferers whose treatment at the hands of their GP's/Endo's is appalling. My forum has very heavy traffic - from the 1st July to date, there have been over 1200 messages from members asking for help and support as they are being failed by their doctors.

(Quote)"And as for the involvement of big pharma, thyroxine literally costs pennies so there's not much profit to be made there".

As the NHS is failing to diagnose thousands of sufferers in the UK, they are not even being prescribed the medication that you say costs "pennies". Therefore, "cost" just does NOT come into the equation and is irrelevant.

As a consequence of this, other more expensive drugs are being prescribed to treat the common underlying symptoms. The dangerous consequences of low thyroid include: serious mental problems, seizures, heart disease, diabetes including misdiagnosis and complications, constipation resulting in colon cancer, all female problems (due to high amounts of dangerous forms of oestrogen), including: tumours, fibroids, ovarian cysts, PMS, endometriosis, breast cancer, miscarriage, heavy periods and cramps, bladder problems leading to infections, and others.... all of which could have been dealt with if the proper diagnosis and treatment of hypothyroidism had been achieved.

Many thanks, at least, for taking the time to look at our website. I also hope that you now set aside some time, to study at least, a few of the references quoted, by way of self enlightement of this issue, otherwise, if professionals have little time to read reports, studies and research papers. what is the point of publication?


Sheila
www.tpa-uk.org.uk

shetur

melbury wrote: »

[

Have read that Armour thyroid tabs don't suit everyone. Surely the thyroxine must be pretty effective as so many people are on it. I concede that there may be the odd case where it doesn't help, but these must be few and far between. Also, from what I have read, it sounds a very complicated process actually getting the piggie pills - if indeed you can get a GP to prescribe them in the first place.

"

Armour does not suit everybody, in the same way that L-thyroxine doesn't suit everybody. However, the majority of sufferers do very well on L-thyroxine alone. I have no idea of the percentage, but it is high. Unfortunately, for a large minority of sufferers of hypothyroidism, they do not do well. There can be several reasons, but the main one is they are unable to convert the inactive thyroxine to the active hormone T3. T3 is needed by every cell in the body to make it functioln (and to make the brain function) and for such people, they need either a combination of synthetic T4/T3 or the natural thyroid extract Armour, because the latter contains all the thyroid hormones a normal body requires.

There have been rumours that natural thyroid extract is dangerous because it had potency problems in the past and that the T4 and T3 content was not standardised and differed in every batch. Doctors believed this was true and would not prescribe it (especially as the BTA/BTF tell them the same untruths too). Many doctors are now doing their own research and realising this is incorrect. Armour is not licensed because it has never required a license - it has never had problems that required it to go through the drugs licensing procedure (as was the case with synthetic thyroxine) and it was 'grandfathered' in. Natural thyroid extract has been used safely and effectively for over 100 years and was the only treatment until, during the middle of the 1970's the newly manufactured synthetic thyroxine became the 'gold standard' and Armour fell out of favour. If you are lucky enough to have an open minded doctor, one who has taken time to find the facts, then he can prescribe Armour for you within the NHS, but, because it remains unlicensed, has to take on this responsibility himself, because should you, or anybody else sue him/her if something goes wrong (as could go wrong with any medication) his/her medical insurance does not cover him/her :eek: .

Sheila

kombucha

I found this post in some ways helpful and have to say its thanks to google!

I had a tsh of 8.23 hormones in range and diagnoses compensated hypothyroidism last year from an endocrinologist, I am in the uk

The problem is I was aware of the acceptable levels of thyroid hormone in the rest of europe and america due to all the raging debate out there over what is "normal" and with the problems I have personally, it gave me a nervous breakdown on top of things

I seen Dr Barry Peatfield who I had communicated with several times and he recommended Isocort from the USA and two bovine glandulars from Nutri, one adrenal and the other thyroid that don't require prescription

I stopped the glandulars when they ran out and had my thyroid blood test repeated privately and had a TSH over 9 and raised ft4 and ft3

I carried on with the Isocort but stopped at the turn of this year.

Dr Peatfield had discussed with me and at this point recommended I take Cortef and follow it up with armour. The problem is there is no blood cortisol evidence of an adrenal problem with acth, cortisol and stim test although my response was a bit blunted a lot of things can cause this and I started high. It is a stressful condition!

I couldn't get Dr Peatfield to communicate with my GP although I was keeping him informed aswell. Everything was "in due course" that was as good as the Endocrinologist wanting to just repeat tsh every 3 months obsessing over the number 10 on a .4-4.5 range

The problem with Dr Peatfield is you feel you are talking about hydrocortisone steroids like smarties and although I was tempted I couldn't self medicate this or Armour in the end without some bloodwork and monitoring. Personally I can understand why thyroxine is considered the first choice treatment and if it doesn't do its job then look into other thyroid treatments

I seen a different Endocrinologist and had a clear mri scan to rule out pituitary tumour producing tsh and had the TRH stimulation test with an exuberrant response, my mum had an exaggerated response and also a raised baseline tsh. Sub alpha units and heterophilic antibodies interfering with the assay were also checked by the hospital

I feel now my problem has become a lot more difficult and don't know if those glandular supplements contributed because I have never taken thyroxine. I feel the same in my condition except the numbers of the thyroid hormones are more difficult to understand with a high tsh and how to treat it. I am waiting for a referral to a professor who specialises in thyroid hormone resistance but it is a rare biomedical finding mostly spotted at birth and then the thyroid hormone receptor genes are looked at for mutations

I currently go to hypnotherapy, long changed diet and you can tell from the username I am doing what I can to stay sane

Sheila it is interesting with Ferritin I had a result of 70 something and had it double that number last time checked probably due to changes I have made. It is a crazy ten fold range they use for what is optimal or even normal for this, Nevermind!

Your article at the BBC is right in the sense that in my case and probably several others getting the tests done properly for thyroid hormones in the first place. The nhs tsh tests carried out by my GP weren't very sensitive and they don't measure free thyroxine. Basically getting a tsh test from them is now considered meaningless for me that is from a GP themselves comparing tsh history. My mum was another example when checked in the hormone clinic

I read some of the British thyroid associations guidelines and its interesting the question of the upper range lowering to 3 and even 2.5 in some places was not considered because while acknowledging it they can not justify the amount of people that would require further investigation in the uk. So it is a bit political and has something to do with money you would think

I can't believe it takes so long to address a problem from a small gland in your neck that is so important to quality of life :wall:

lrr_2

Hi there, sorry to drag up this old thread but any advice appreciated. Underactive thyroid for years. Got all the usual symptoms - feeling cold all the time, dry skin, tired etc and to be honest have never really felt any better. Doctor has finally upped my dosage to 100mcg and due for a retest in a few weeks. However the one thing that really gets me down about having this - is my weight! Was usually around 10 stone but has steadily went up over the years and now has just went over 13 stone for the first time which im gutted about! Have tried everything over the years and nothing has worked. Eventually gave up my gym membership last year! Even put on weight when doing the slimfast plan - work that out? Anyway my question is - has anyone managed to lose weight as when I talk to the doctor about it he just says thats common and thats about it. Im only 35 and dont want to imagine what weight I will be when im 50! Im vegetarian, eat healthy-ish most of the time and lead a quite active life most of the time (even though I feel tired most of the time)
WHAT AM I DOING WRONG?