Suffering many disturbing symptoms from about 15 years ago, chronic throat gruffness, hair loss, weight gain, mus le weakness, debilitating weariness, etc and told continually it was only menopause, age, etc etc.... Finally self diagnosed through Internet research of symptoms. Took a 5 year struggle to get beyond 25 mg Levothyroxine, quoted NICE guidelines continually - I was borderline TSH 3.9, rising finally to TSH 7. Now on 150-175mg Levothyroxine I have still been unable to get T3 tested or any other screening of adrenal, cortisol, etc & just recently become aware of DHEA levels as a possible problem & possible benefits of ARMOUR medication. Not quite sure of the range of alternative medications that are available, eg T3, DHEA. Natural dessicated Thyroxine etc.
I have always been highly driven & committed as an artist & teacher with an energetic enthusiasm and focus, but I have had to give up Doctorate studies, and reduce work due to the debilitating state of this chronic condition.
I am now trying to find a private Doctor or Endocrinologist to consult, based in London, to get a full health & hormone screening, and prepared to prescribe the above alternatives. I would be very grateful for recommendations from personal experience.
I have come across so many individuals undergoing similar problems, most of them women. I wonder wether there is any connection between the seeming epidemic of Hypothyroidism in my generation of women, with being the first to be prescribed hormonal contraceptives at the initial very high doses, (Gymovlar etc) and later fertility treatment, also with very high doses of hormone based medication. Just a query to research endocrinologists.
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VeronV
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Email Louise warville at thyroid uk, she has a list of doctors who will help. The thyroid uk website has full email.
VeronV,
This illness wastes our precious lives, bringing misery and suffering.
You are doing the right thing in going after a chance to regain your health. I hope you find it.
I don't know if this seeming epidemic of woman becoming hypothyroid is connected to high dose hormones in contraception. There appears to be epidemics of many other auto immune diseases too. I think we are just living in a very toxic artificial world where our bodies are just breaking down.
I too am trying to find my path to wellness. Good luck.
Keep posting. It is inspiring to hear about other peoples journeys and may give someone useful informations or confidence to try a different approach themselves.
There are so many sorry stories on this forum, mainly due to either being undiagnosed due to the guidelines of the BTA (i.e. no medication until the TSH reaches 10 - which it might never do) or insufficient levothyroxine or, like me, far more unwell on levo than before my diagnosis (by a first aider) when my TSH was 100. All doctors/specialists I saw not one did a test for my thyroid hormones.
My own view is that before the 1960's we were diagnosed on clinical symptoms alone and given Natural Dessicated Thyroid Hormones and there would seem to have been few complaints and most probably led healthy, fruitful lives. Nowadays the only hormone to be prescribed by the guidelines is levothyroxine (made me more unwell) and is T4 only to be converted to T3 but doesn't always sufficiently. Also NDT is more synergystic with the human body than a synthetic although many seem to be o.k. on levo. The fact that we've over 24,000 members on this site alone shows that there is something not quite right with the guidelines.
Doctors who have treated patients as they were taught as medical students before the 60's were hounded by the GMC because they treated patients by their clinical symptoms alone, and prescribed natural dessicated thyroid hormones if patients were complaining after being prescribed levothyroxine. They either resigned due to the strain or lost their licences. One died of a stroke and he wouldn't give in as he knew the guidelines were wrong. He is detailed on the following link and previously he wrote to every Endocrinologist (he was a Virologist himself) in the country to a meeting to discuss the 'parlous' situation of people like us - needless to say not one accepted his invite and the last remaining Endo withdrew his acceptance the day before.
The Brtisish Thyroid Association's guidelines are wrong - nowadays doctors are not trained as medical students on clinical symptoms. Doctors told only to medicate when TSH reaches 10. The USA's guide is when TSH reaches 3. It's now even worse as at the American Thyroid Association's 2013 Conference when an eminent Endocrinologist pronounced that if we still had dissatisfaction about levothyroxine and our TSH was now in range that we now had a 'Somatization Disorder'. (who funded the Meeting?). He also stated that (showed a picture) the first woman who was cured in 1892 was given (levothyroxine). Considering levo wasn't prescribed until the 1960's that wasn't quite true. The woman was given pigs thyroid gland the precursor of Natural Dessicated Thyroid Hormones which it is very difficult to get prescribed nowadays as false statements have been made.
Despite Dr Lowe (deceased 2013) sending yearly reminders for a response. He never did get one.
Is it because the BTA and the RCoP is mainly headed by men that we women suffer more than necessary. More women are affected than men although we do have some on our forum.
Lyn Mynot of Thyroiduk.org.uk is the one to talk to as she began Thyroiduk and this is another woman's story and has taken her case to the Scottish Parliament.
Thankfully, I am well now and take T3 only, liothyronine. I was also well on NDT. I was very, very unwell on levothyroxine but I doubt the BTA would believe that and say it was all in my mind.
Thanks shaws for your support and for so much detailed info, it sets my own problems in context, which helps a lot. Glad to know you've reached the correct mess and are finally well. It gives me hope.
I think it's anger that drives us after we are eventually diagnosed: complain about feeling much worse and being told that levothyroxine is the only prescribed medication. Thankfully my Endo added some T3 and I was phone shortly thereafter and told to stop it and I said No I wouldn't (I did feel so much better) so I was told to reduce T4 instead. They mistakenly believe that a very low TSH can cause a heart problem, whereas it would probably be caused by too low a dose of thyroid hormones.
I think your thoughts about earlier artificial hormones having an effect on things later may well be the case - but you will never find anyone admitting that. I personally think Chenobyl also has had an effect - they are still testing the sheep in North Wales before they go into the food chain - but hey what about the humans ? I live in Crete and on day 2 after the blast the winds changed and brought contamination down through the Balkans and into Greece. It is talked about here openly and there is a lot of thyroid illness. I was once watched a film about the children in Russia all lined up and showing their scars having had their thyroids removed after the accident. My daughter was in Birmingham at the time and has suffered thyroid cancer - I was in Cornwall.
Shaws has covered everything so well - however I would just like to add that before going to see someone privately it may be a good idea to have the following tested - B12 - Ferritin - Folate - Iron - VitD. when these are OPTIMAL and not just in range - they will help you to feel better....just something I have learnt from this forum and not always carried out by Endos - even if good You need good levels of Ferritin etc. for the T4 to convert into the Active T3. You could have your tests done privately through the mail and post the results with ranges here. Information on the main Thyroid UK website for companies offering the service. Used by many here.
Also have the thyroid anti-bodies tested - anti-TPO and Anti-Tg - as you can have in range TFT's but with raised anti-bodies - Hashimotos will be diagnosed. This is what happened to me.
My own diagnosis came late at 59 and now 10 years down the road I have found wellness. Most of it learnt from people here - pointing you to good websites/books/links and sharing such good information. Also living in Crete helps where the Medical system is easier to access and we keep all our own records ! I think it's call freedom of choice !
Wishing you well - and will look out for your future posts
Yes, I have also wondered about nuclear fallout and accidents having a possible role. I was a small, heavily milk-drinking child in Cumberland when Windscale/Sellafield (as it is now called) blew. They threw the milk away in a small area around the plant, but looking at modern research into this, the wind carried pollution across far wider swathes of Britain than was realised at the time. It seems to me likely that the milk from Eden Valley Dairies, which collected widely across the area, was affected.
Almost impossible to prove, I think - so many will have moved away. But I don't think anyone is looking either.
That is an interesting idea! I tried several different 'pills' but my blood pressure went sky high, so I was not allowed to take any for very long, and therefore did not use them for very long. You may well be on to something there though, as even if you do not take the pill you are exposed to the hormones via the water supply, just as with fluoride.
Marz,
I had never thought about Chernobyl perhaps having caused some of this. It is interesting that my kids know about the disaster (12yr old twins and a 16yr old) and when they asked I had forgotten about it! Are problems with the thyroid more common in those countries that were closer to the fall out?
I do think that perhaps the lack of symptomatic treatment since the reliance on TSH tests has caused massive problems and that people would have already been treated due to symptoms in the past. I wonder therefore if the numbers seem more now because of all the people struggling to feel better without the help they would have had in the past.
Shaws, Clutter
Do we know what the numbers were when people were routinely treated? And if we do, can we compare them with any (presumably projected) numbers now?
And (in the UK at least) treating the symptoms, (which requires long term medication, numerous visits to the GP and often surgery to deal with pain in fybro and menorrhagia and all the other various symptoms, not to mention those who are unable to work or who eventually require carers) must be costing the state a massive amount.
All for the want of a couple of blood tests (at £75 - £125 each) and a pill that costs around £2 for 30 (in other countries which have numerous suppliers, rather than being tied-in to certain supplier contracts where they seem to name their price).
If the symptoms were seen for what they are and treated accordingly (rather than by TSH) we would save a lot of money to the state and more importantly misery, relationships etc etc!
I do not know the numbers of people affected by the fall-out in other countries. Also mobile phones is another problem as they are mostly held close to the thyroid/neck. Now who will admit to that one I wonder ?
I hate mobile phones. Makes my blood curdle when I see you kids with the things stuck to their ears. I'm certain it can't be a good idea. But as with microwave ovens, nobody listens to me...
Me neither! Don't have a mobile phone, either! For one thing, I Don't want people ringing me in the queue at the supermarket. Had enough of that when I was working. Now I'm retired, if they want to speak to me, they can catch me at home. Or ring back.
Interesting you should mention Chernobyl. A friend of ours is an environmental activist in France and tells me that it is well known there that the epidemic of thyroid disease we now have is as a direct result of Chernobyl.
...and other toxic stuff - mobile phones ?? Life has changed dramatically - and everything around us - sadly....
The best advice I have ever has is with the STTM website (stop the thyroid madness) and their FTPO facebook page.
I'm in the UK and self treating with Thyroid-S an NDT and have added T3 into the mix because of reverse T3 problems. I am working on my adrenals and high ferritin. All of this I have had to do myself, all the blood tests, the saliva tests and purchaseing the medicines from abroad. Its the best thing I have ever done. When I think of how many hours work that were wasted, the promotions I lost because of tiredness I could cry. At least now I can do a full days work and come home able to socialise shows that its a money well spent.
One thing that does happen when you are on NDT and T3, which suppress your TSH, is that all of a sudden doctors and labs are falling over themselves to do Free T4 and Free T3 tests. The next set of tests I do I will just purchase an RT3 kits and ask the nurse to fill it for me.
I see several of you posting that they self medicate with Thyroid-S and NDT. How do you do this without a doctors script? Are they over the counter medications? I am some what new to this forum and trying to digest everything that is coming through so forgive me.
We buy online from countries that don't have the draconian restrictions we do. At the moment there are sellers on<Admin deleted> selling either Thyroid-s or Thiroyd. It takes about 3 weeks to arrive if you are in the UK.
Guysgrams, you should check your Customs regs before attempting to import prescription meds. It is permitted to import some medicines into to the UK for personal use but I think it may be different in the USA.
For the UK, we are permitted to import any medicine that is not on the controlled medicine list and is not subject to a temporary ban as some "legal highs" are. This is restricted in that the person ordering must be doing so for him/herself or a member of their household. (There is no clear definition of "household".)
I completely agree with Clutter, check your own laws and regulations.
Yup, I am in the UK and we get melatonin by post - we have a prescription for it, the psych is happy with it, but the sub-lingual, nice flavoured kind which seems to work best doesn't seem to be available by prescription, so we pay for it from abroad.
I was given the progesterone coil for 6 months for contraception it did not suit me , I bled constantly. Following removal I became hypothyroid and went through a premature menopause immediately I do not know if there is any connection but I was healthy before the coil , I was about 42.
Good luck in getting well,I am finding it very much trial and error
First, my deepest sympathies to you, and I pray you will find a good solution to make you functional. I am a woman with Hashimoto's, and my understanding is that the thyroid epidemic affecting women (I know some men are affected, but it seems more women suffer) is due to a perfect storm of several factors, including birth control pills, chemicals and hormones in foods, (including chemicals in cans, aluminum, etc.) fluoridated water (a study in England was released within the past 3 months clearly demonstrating that people living in areas with fluoridated water suffer more hypothyroidism), household chemicals, and anything else that causes exposure to chemicals. Paul Robinson, an English writer, has written an excellent book that I recommend, "Recovering with T3." He has Hashimoto's, and his book contains a tremendous amount of excellent information about all facets of thyroid disease.
Thanks for Paul Robinson book. Yes, I was brought up in a fluoridated water area. Am always trying to get fluoride-free toothpaste for same reason.
My GP won't even attempt to find out if my Hypoth is Hashomoto's. When I asked just said "it's a very common problem...." I think they are trained to stonewall!
I was prescribed thyroxin for 13 yrs for supposed hypothyroid.2yrs ago I became acutely ill high bp ,anxiety,tremors,,tinnitus,pins & needles in hands,memory loss,palpitations,insomnia ,brain fog,nausea,headaches ,,profound fatigue.Ceased thyroxine thanks to chemist who said I was thyroxtoxic even though my blood levels ok.6mths later after extensive tests diagnosed with Vitamin b12 deficiency which accompanies thyroid conditions also effects seratonin levels which I found when prescribed melantonin I could get 5hrs sleep.My cortisol levels were low also Vit d which can cause joint pain & high bp.I suggest to have Vit b12,folate,ferritin,iron,Vit d,cortisol levels done.Google Sallys Pacholok's book "Could it B12 ? My husband & I life saving book.Vit b12 level should be >500 if you eat red meat.You need to do your own research.
When I went to US some years ago, was able to get Melatonin in health food shops, but not available here. It really helped my insomnia. I now use anti histamine based Somminex as only way to sleep more than 2/3 hours, but I don't know the long term problems of using this, but it sure works.
VeronV, welcome. You know that you can pay for a private blood test to get your free T3 and antibodies tested - a full thyroid panel - you don't have to see a private doctor to do this. It saves arguing with the GP. Then if they show Hashis etc you hand over the evidence to your GP and smile forgivingly.
Long ago I read a GP's comment that The Pill was "a massive experiment on women". We were all guinea pigs, and I am sure it will turn out to have all kinds of unknown bad effects, probably going into the next generation and the one after. But at least it allowed us independence to some degree. My great grandmothers both went through 14 pregnancies.
Thanks for info and support Aspmama. Yes, we had great gains, but I just wish there was more honesty, recognition and response to our concerns and health problem as the first "guinea pigs", from the health professionals, rather than the stonewalling we are getting.
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You need good levels of Ferritin etc. for the T4 to convert into the Active T3. You could have your tests done privately through the mail and post the results with ranges here. Information on the main Thyroid UK website for companies offering the service. Used by many here.
Hypothyroidism
Subclinical, mild and severe form of hypothyroidism - same thyroid hormone dosage?
Possible new type of hypothyroidism?
