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Have you been diagnosed with Fibromyalgia and/o... - Thyroid UK
Have you been diagnosed with Fibromyalgia and/or Chronic Fatigue?
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•
Thanks again Shaws.
Not got time to read it all now but looks interesting and worth reading.
Reading this was like reading about my own journey; a clear and well-written article, but I am a little sceptical about going down the Naturopath route.
Yes, I am a strong believer in the connection with hypothyroidism and fibromyalgia and followed Dr.Lowe’s advice to try T3, once vits/ mins optimal. I was in great pain and seized up around hips making me sofa bound 24/7. Over the last 9 months I have slowly added 37.5 mcg T3 to 100 mcg levo. , my last blood test showed the FT3 was over range at 7.69 and I reduced my T3 dosing by 6.25 mcg ie 1/4 of a pill, but within days had started to seize up around the hips and legs to ‘jelly‘ late afternoon, so and had to go back onto ‘over dose’ so I can walk!
Before blood tests were introduced (for levothyroxine alone) we were prescribed NDT and we gradually increased dose until we were symptom-free. Dr Skinner, Dr Peatfield, Dr Lowe and others who treat the patient and not the blood test followed this method of slowly adjusting dose.
The majority of doctors/endocrinologists only take notice of the results of a blood test and prescribe 'other' medications for the symptoms instead of increasing dose.
Yes I think I prefer to feel more ‘better’, but my surgery are trying to get me to do my bloods for my diabetes, which will include a TSH test...heaven knows what they will make of a 0.005 type result!
Could you just not consent to the tests you don’t want?
I doubt I could ask to skip the TSH test as the blood is drawn by a healtcare assistant working to ‘orders’ - several phials of blood to test for blood sugar, liver/ kidney function etc with TSH , but nothing re vit/ min levels etc...I only hear back if they are not ‘normal’. I’ll ask just to find out the response.
Another related article by Dr Lowe
This a great article and I am going to keep my eye out for her book.
This was my situation before finding my current good Endo. I was treated with just Levo and only tested for T4 and TSH-both of which did not have optimum levels) and had terrible muscle and joint pain most of the time. This went on for years.
A diagnosis of fibromyalgia was made and I just continued to hurt.
Last April after starting effective testing and treatment for Hypothyroidism with a new (wonderful) Endocrinologist he prescribed 50,000 units Vit D weekly as my D level was dragging on the ground and my previous doctor refused to test it and he started me on T3 in addition to T4. In three weeks (probably due to the Vit D) all my aches and pains were gone and I had the Fibromyalgia diagnosis removed from my online medical record chart.
Info from this site taught me what I needed to know to successfully battle the medical establishment and find the treatment I needed.
Most doctors, in my opinion, don't know enough (or care) about learning what effective thyroid treatment involves so they can't share it with their patients.
I'm a retired nurse who tries to keep learning and I didn't know half this stuff til I joined this site. Now I educate my doctors and if they don't want to learn then I move on.
Thanks, shaws
stiltzski• in reply to
That’s great news. I’m really pleased for you. If you live in the UK, would you be willing to share by PM the name of your endo?
• in reply tostiltzski
Unfortunately I'm in the US (still glad to share tho would be a bit of a drive!lol.) I'm in Atlanta.
It took me a while to trip across this Endo. (Had to kiss a lot of toads before finding the prince. )Word of mouth did it for me. One day I was talking to my a-fib doctor ( who has helped me before with non-cardiac concerns when I shared other probs with him). I was hurting so bad from the muscle aches and pains I shared with him that I believed it was thyroid related and asked him for a few pain pills just to have on hand when I had a painful day and needed to be out and about to get things done.
He gave me a small prescription and said he agreed; thought my pain problem was thyroid-related and referred me to someone he knew would listen and help me.
By the way, it is generally agreed a big part of my atrial fibrillation was caused by too much T4 which kept being raised til it got to 300 mcg with no symptom improvement. It was lowered and then everyone was afraid to raise it because of the atrial-fibrillation.
Finally I got a pacemaker and this cardiologist went to bat for me saying my TSH could be below 1.0 and the pacemaker would protect me.
So now I'm on T4, T3, proper Vit supplements. My TSH is below 1 and no one is going nuts over this. And I'm beginning to feel well.
I say keep sharing your story and I believe the info and a good doctor referral will come your way. I hope so.
Take care. irina
m7-cola• in reply to
Good for you!
jgelliss• in reply to
Kudus to you Irina . Have you thought of becoming a nurse Practitioner ?
• in reply tojgelliss
Hi jgelliss. Thank you so much for the compliment.
I'm 74 and been retired for several years. I do volunteer but not with humans but at my local animal shelter.
When I went to the orientation two years ago I was the oldest one there and everyone else looked to me like they were under 30. The shelter was kind to me as I have knee probs and have a hard time walking large dogs and cleaning kennels so I usually volunteer in the clinic and also in a separate area where they try to socialize cats and kittens to help them adjust to future homes with other animals. The room is called "The Kitty Motel." I've had and adopted animals all my life except for now as my senior living community doesn't encourage animals.
Before he died in 2013 my brother and I shared a home and we fostered sick animals and esp animals who patients with AIDS could no longer care for. I always thought we would both live for years and he used to joke we would be known on our block as "The Old Queen and the Cat Lady."
I also write healthcare articles and am trying to get a website started geared to helping seniors navigate today's world. It really is a young person's world and at least here in the US seniors are often dismissed and undervalued (in my opinion!)
Whew that's probably more than you wanted to know.
Take care. irina
jgelliss• in reply to
Hello my American fellow . Irina on the contrary your are a treasure and you have a lot to offer . Numbers don't mean anything . It's all mind set . I know many young ones that are old . I often say that people that retired have so much to offer they should retire from retirement .
Wishing you many healthy accomplishing years ahead .
• in reply tojgelliss
Thank you. Where are you?
Hope you don't mind my digs at the "Orange Toddler" every now and then. LOL
jgelliss• in reply to
I'm In NY . Where are you located ? What a small world after all .
• in reply tojgelliss
I'm in Atlanta, Georgia. Been here since 1979 but grew up in Miami Beach, Florida.
My daughter, my sister and her family are in Florida-scattered around Orlando and St.Petersburg. Just an 8 hour drive from me.
jgelliss• in reply to
You must be going through very cold winter . We are experiencing in NY frigid temperatures . It's about 11 degrees Fahrenheit -11.6667 cellulose . Try to keep warm .
• in reply tojgelliss
You too. It's very cold here today and as it's a holiday (Martin Luther King) I don't have to go out.
Right now having coffee and watching TV reruns (Perry Mason and Columbo) very productive!!
jgelliss• in reply to
I love those classic ones . Perry Mason was one of my favorites . Columbo was comic relief for me . Peter Falk was a great actor . I imagined him to be in real life like that . I think his rain coat ended up at the Smithsonian .
• in reply tojgelliss
Columbo is one of my favorites. I love the expensive, stylish backgrounds-very lavishly done. Also Murder, She Wrote.
Plus I love the British sitcoms which are on Public TV Saturday nights here in Atlanta. My 2 favorites are As Time Goes By and Keeping Up Appearances. They have been running for years here and I just keep re-watching them.
Escape from the real world sometimes is necessary for mental health-at least for me.
It is good you have interests outside of 'hypothyroidism' and caring for animals and to find good homes for them must be extremely rewarding for you.
• in reply toshaws
I miss having an animal. Since moving to senior living-at least this one I've chosen not to have a 4 legged friend. Many people here don't like animals and bitch and moan about people who do have pets.
I recently saw an ad on TV for a senior living community which is much more geared to residents' needs and wishes instead of what is convenient for staff. They even provide pet care on site and seem very pet-friendly.
In my opinion these differing philosophies make the difference in seniors' comfort with this type of living and probably our health and quality of life.
Very interesting shaws, I did pay to see a private endocrinologist, and he felt I needed T3. I paid for a short trial of T3, and it helped, but my GP wouldn’t prescribe it. It was refused even though the endocrinologist wrote twice requesting it. The cost here is so high, I can understand why it was refused. When I sourced some from Greece it triggered a skin problem that is still not settled. I see a dermatologist regularly.
So I went back to Levothyroxine.
To try to find out if a tablet is causing problems for you, I have read that taking one anti-histamine tablet one hour before thyroid hormones and if you don't have those symptoms, it is the tablet and a change of make might be helpful. It is usually fillers/binders in the tablet which can affect us - not the hormones in it.
I assumed it was something in the Liothyronine from Greece that triggered my skin problems, and although I stopped taking them right away my skin problems are still there. Do you mean take an antihistamine before my Levothyroxine?
MariLiz could you please tell me how your skin problems manifested in you. My son and I have had skin problems since 2010 when we were changed from Goldshield Eltroxin to Mercury Pharma. I am interested in anyone else who has skin problems caused by thyroid meds.
I do have sensitive skin and have had to be referred to a dermatologist in the past. However, after taking the Greek liothyronine for a few weeks my skin flared badly. I was getting patches of eczema on my arms and legs, but worse was the irritation around my vagina, and indeed internally. The dermatologist I see now hasn’t given me a definite diagnosis, but thinks it is lichen sclerosis. I am using a very strong steroid cream and a special cream to wash with. It is possible that it wasn’t caused by the liothyronine, but just another autoimmune condition. Difficult to know, but it definitely began when I took the liothyronine.
My skin problem appears as though I react to shampoo and soap. It is as though my skin absorbs these items and lays on my skin like a layer of vinyl. It is very sore, a bit like sunburn. There are visible spots that are sticky. Something has definitely gone wrong with Levothyroxine over the past 9 years. My GP, who is also on our local CCG is now trying to push me to go down the private route.
That sounds nasty, I haven’t experienced that, but I do need to use a soap substitute for washing. A lot of normal soaps and shampoos contain SLS, sodium laurel sulphate, which can cause skin problems for many people. The substitute I use is called Aquamax, and I get a large tub on prescription. I have also bought a scent free bath and shower gel from The Green Company ( online).
My experience of seeing a private endocrinologist wasn’t as helpful as I’d hoped. Ultimately the GP and my local CCG wouldn’t agree to prescribing what he suggested I needed.
Due to cost, I think. When I initially bought some T3 for a trial with this endocrinologist, it cost me £100 for a months worth. By the following month the price had doubled to £200. The T3 I sourced from Greece caused my skin problems, probably due to the fillers they used.
Does your GP want you to see an endocrinologist or a dermatologist?
My son (also affected from the same time,when generics came into being after Goldshield Eltroxin went off patent) and I have tried all makes of Levothyroxine and I have tried two different makes of T3. The Greek one and one from Mexico. The T3(both) brought my BP down and improved bloods, but the skin condition still persists and it is now nine years since this started. I have tried Green People products as well as Weleda and others, but to no avail. We have also seen various Dermatologists and have been under an Endocrinologist for many years. None of whom are interested. Needless to say all they are interested in is the TSH. My son has even been to Guy's Hospital Special Allergy Clinic where we were told it was not an allergy, but advised to band together with others and take out a Class Action against NHS.
In the beginning when things went wrong there were many people complaining, but I have found it difficult getting people together who have this problem. All the sites where people were complaining have mysteriously vanished now. In our case it was definitely the Levothyroxine change that caused my son and my skin problems. Thank you for telling me your experience.
If you don't have problems on levo as you did on liothyronine. No - you don't have to take an anti-histamine.
I think if we have a problem with any medications, taking an anti-histamine tablet 1 hour before could inform us that it is the tablet/fillers/binders could be the problem and if symptoms are relieved it is definitely a switchover that is needed.
I think if anyone has a problem with a certain make of thyroid hormones, they should contact the pharmaceutical company giving the name of the medication, the Lot No. and the expiry date which would alert the Pharma Company to check their product or change something within it.
MariLiz
nightingale-56
How does that work if you’ve bought liothyronine from a Greek company over the Internet? I know there is a system for reporting medicines in the UK.
Hi shaws All was complained about at the time, but wriggled out of. The problem still persists and NHS know, but will do nothing. I have tried other medications, but to no avail, so stick with the least troublesome. Generics are not working well for me or my son.
I personally believe Dr Lowe is correct, my self diagnosed fibromyalgia type chronic aches/pains, electric shock/stabbing all over pains, chronic fatigue were down to low thyroid, cos all those fibro type pains and brain fog lifted overnight after an increase in Levothyroxine (thyroid medication)
Though not accounting for my many other symptoms of deep bone pains which were down to low vitamin D and again pains all went away quickly and stayed away once on a higher dose of vitamin D3 (not saying everyone will have the same results cos we are different in body tollerences)
(My hair growth problems were down to low in range, but not out of range ferritin which was sorted once I put myself on some iron pills.)
So many fibros or low thyroid patients with fibro, slip through the net, told their bloods are in normal range when they feel far from normal. Blood ranges need to be widened to catch more sufferers. Not forgetting fibro can also be linked to B12 deficiency and many fibros and low thyroidys report or find later they are low or deficient in vitamin B12.
I believe most illnesses/symptoms have a domino effect on each other.
• in reply toCoastwalker
I agree with the Domino effect. Especially when doctors don't recognize how many symptoms can be associated with one illness (ie hypothyroidism.) Instead they attribute some of our hypo symptoms to another body system and either prescribe another med themselves or refer us to another specialist and we are off and running with more meds, diagnostics, and possibly unnecessary medical bills.
There are so many little things doctors don't mention or even believe especially regarding supplements.
About a year ago I began to have some symptoms of restless legs. I didn't want to take another pill and my sleep doctor suggested trying to get my ferritin up above 100. It was within the normal range but at the lower end. I really don't like liver but began eating it weekly. I wanted to avoid pills because of stomach issues.
So every Monday I drown the liver in onions and mushrooms, eat it quick like medicine and brush my teeth. This keeps my ferritin at a good number and my restless legs symptoms have not returned.
I also give myself B12 shots (easy for any of us to do) which I really believe helps my whole nervous system and probably helps in ways I don't even know about.
I found a book at a library sale several years ago which is an ongoing reference book for me. It discusses in depth how many meds we are given deplete our bodies of vitamins and minerals and how to supplement for replacement.
It is called "Drug Muggers" by Suzy Cohen. When we see how much Big Pharma can take a toll on nutrition I think it helps us understand the side effects associated with our meds and gives us a plan to lessen them with correct supplements.
Coastwalker• in reply to
So agree with what you have said Irina1975, many are starting to wake up and realise the dangers of our health systems. Thank you for your book suggestion. 👍
• in reply toCoastwalker
You're very welcome.
Coastwalker• in reply to
Also interesting about your liver protocol that got rid of your your restless legs. 👍
The guidelines in the UK for diagnosing a patient who has clear symptoms but told their TSH is in range (somewhere up to 10) are horrendous. Why have the associations stipulated TSH must reach 10 without taking their symptoms also into consideration. Before the introduction of Levo and blood tests, we were all diagnosed upon our clinical symptoms and given NDT (natural dessicated thyroid hormones) which was increased gradually taking account of the relief of symptoms.
Why - in some other countries - are people diagnosed if TSH goes above 5? Some doctors also prescribe if it is above 3.
• in reply toshaws
Before I changed Primary doctors and found a good Endo my old Primary said she wouldn't change any thyroid doses til my TSH got to 10 or 12. It was slightly over 5 and I felt dreadful.
Soon after I got rid of her and my new Primary listens and considers my input even if his thinking is different.
I recently referred a friend to him and she loves him too. His philosophy is he may disagree but if it may help his patient he is willing to give something a try.
The old Primary just dug her heels in and looked bored. I only gave her a try because she replaced a good doctor I had for years who retired.
We do rely upon our doctors to know more than us with regard to anything ill-health but it comes as shock when we, who are hypo patients, aren't improving and some members feel worse than before they were diagnosed but the doctors just state 'normal' when patient certainly doesn't feel normal and we are left 'high and dry'.
• in reply toshaws
Too true. I have a patient portal to communicate online with all my docs. It's very handy and I can check labs, EKG's almost anything. But I can't access their medical notes.
I recently picked up some papers from my ortho doctor to take to a specialist referral and I read them. A lot of what was written for the new specialist was incorrect.
One of the facts he had wrong was he wrote I was right-handed. I'm left-handed. I'm not sure why that was pertinent to my knees but it red-flagged that no one bothered to check accuracy regarding much of my history.
I made copies, corrected all the inaccuracies on the papers with a highlighter and red pen and will take one copy to the new doc in February.
The other copy I sent to the chief MD for patient relations who always sends out post care evaluations. I also sent an accompanying letter. I still have my 3rd corrected copy; debating whether I should send it to the orthopedic doctor who dictated it incorrectly.
Makes me wonder what other things are wrong in my Portal records. I believe we should have a way to access them and get them corrected. We can correct innocuous items like address, phone but medical notes -any MD entries- are impossible to access.
This kind of care frustrates me.
The pity is that if doctors treat the patients outside the guidelines they could lose their licences. We have had several doctors penalised for doing as they were taught as students i.e. that was before levo and blood tests became the standard by gradually replacing NDT/symptoms. Instead of treating 'symptoms' it is only by the results of a blood test nowadays.
• in reply toshaws
I understand that it is a 'catch-22' situation for many good doctors worldwide who would like to do the right thing for their patients but whose hands are tied by governments. This is wrong and I have no answers.
Doctors in the US don't face the same penalties from government for deviating from guidelines (except prescribing opiates and other controlled substances) but are kept "in line' by the legal system here.
We are such a litigious country (frequent ads on TV urge people that have suffered medical consequences of any kind to sue.) This threat of being sued causes almost everyone to sometimes place protecting their medical decisions and licenses from frivolous lawsuits above what's best for the patients.
One of the ways this manifests in patient care is the ordering of often unnecessary tests, procedures, and treatments in order to protect ourselves from lawsuits.
Even when healthcare providers want to do the best they can this very real financial and professional threat influences all of us.
Part of the problem is that there is no penalty for people who bring frivolous lawsuits of any kind.
Also, the trend here for years has been to have very large group practices making it difficult for doctors within the practice who want to offer a different type of treatment. They are kept in line by the group. The group's malpractice insurance rates (which are very high to begin with) can be adversely affected by one doctor's actions bringing a lawsuit into the mix.
For example, my cardiology group practice has over 100 doctors. They have different subspecialties but they are all under one legal umbrella.
This shouldn't be how doctors and others in the healthcare system make their decisions but it is our reality.
I am even influenced by this thinking.
Since I am retired and no longer practice nursing I don't carry malpractice insurance anymore and it causes me to be careful about any advice I offer other residents. I'm careful when someone tells me about a problem that is in the scope of nursing knowledge because I can still be sued.
If a person who is not a nurse offers advice to anyone about how to treat a problem and it causes harm- no problem- but if I offered the same information I am held to a higher standard because I was a nurse.
I would't even suggest an over-the-counter laxative suggestion. My answer when people want to share their medical info and ask for my advice or opinion is to call their doctor or go to the E.R.
I will always help someone who is in need of emergency measures but in the back of my mind I'm always aware of possible legal ramifications.
I was once part of a lawsuit years ago when a patient developed complications after surgery. Everyone who was involved with the operation was sued. We won but the case dragged on for almost a year and was very stressful. The attorneys were sure the patient didn't have a solid case and we had not been negligent but it would have been a jury case and no one knows which way they will go.
Fortunately the patient finally settled for a much smaller $ amount prior to the statute of limitations running out than she was seeking but our insurance rates went up and the stress of the entire event almost caused me to leave the profession.
A good therapist helped me through this.
In my mind once again money and greed reigned supreme.
This was in the 1980's and as I re-read this post for typos I realize I am still angry about what I went through. I guess I have some work to do on myself.
Thanks for listening. irina
When we have unexpected things happen in our life which strikes of unfairness, it does change us.
The stress and strain it causes to the professionals must be enormous and no wonder they work in large practices due to the USA systems.
I think many people who've had different 'difficulties' within the work place can have a much bigger affect on us without realising it at the time.Even years later.
If we've been upset over something, we're told just to 'forget it' but that is far easier to say than for people to forget. I find quite a number of things 'pop up' now and then even if it happened years ago.
• in reply toshaws
True. I would say I am now 'gunshy' about being a part of casual conversations where people are discussing health problems and sharing info about what might have helped others in the same situation.
I wish I felt free to share nursing information I know might help them but even here early on after helping someone with a dressing the feedback I received from her in the lobby in front of others was unappreciative and negative.
I believe she was upset over something else and I was the one who crossed her path at the wrong time but it was hurtful and reinforced the saying that often no good deed goes unpunished.
So now I keep my distance when residents are sharing their medical problems.
I try to have a sense of humor and when asked to do something (one person asked me to give her B12 shots) I just smile and say "the clinic is closed."
So agree with you Shaws, Doctors dont all read from the same pages when diagnosing or over looking Low Thyroid.
Yes Drs. years ago were far more alert to patients thyroid symptoms and prescribed them the better medication (NDT) and I believe patients were allowed to take as much NDT as they needed till they felt ‘normal’ once again. Terrible patients have to fight so hard to get help.
Also so wrong those diagnosed with fibromyalgia and told they just have to learn to live with it and never told fibromyalgia is a well known symptom of Low Thyroid (Hypothyroidism)
Big pharma makes more profits when the 'extras' are added up, i.e. anti-depressants, pain relief, and other 'extras' instead of an optimum of hormones. I think that's why the tests were introduced, because the dose is stopped when TSH reaches somewhere in the range - even the top (around 5) and patients told it is nothing to do with the thyroid gland as tests are 'in range' and doctor may not increase dose to reduce it to around 1.
👍 So true about the ‘money making extras’ also keeping us all ill makes them even more pennies. Thankfully I see more and more Doctors are coming out to say they know they have wronged us and are actually apologising, (saw a you tube video today with a Doctor apologising for vaccines harm done. ) People are certainly waking up thanks to the internet, but as they do Big P pushes even harder against us playing ‘their games.’
I believe that Dr Mercola is spot on about thyroid hormone resistance or central hypothyroidism being a key to the problem of diagnosing anyone with CFS or Fibro. As endocrinologists are obsessed with the thyroid gland and TSH rather than what's happening at a cellular level even with a patient's clear presentation of hypothyroid symptoms. I like the comment about " extremist medical technocrats" of doctors who'll only go by lab test results - lab tests, that are only one piece of the puzzle to a much bigger picture and in many cases can be misleading in the absence of other data.
I was brought up by nature cure (Thompson Edinburgh,) I haven't been vaccinated we were vegetarian and didn't eat white bread sugar etc. I am vegetarian and I have had my tests at a specialist in Ninewells Hospital. Using thyronine makes me feel better. Dr Skinner said to go with how I felt. I have had muscle pains which went away when I took thyronine (my hip, thighs shoulder) I had thyronine for many years plus thyroxine. My daughters (three) and a granddaughter all have underactive thyroid, and also saw Dr Skinner. I know I am ok with thyroxine and T3 together as I always had, but I can't get it anymore and want to buy it abroad where it is cheaper. I am an artist and don't have lots of money! I can't go abroad and live in Fife Scotland in a little village. I look after a schizophrenic son and an old dog who needs a lot of attention and I am 74 and don't have a passport and couldn't afford to go abroad anyway. (we don't have a car). I have lost the link someone very kindly sent over Christmas it seems to have disappeared. best wishes Elizabeth Shepherd.
Thank you for posting that article. Muscle and joint aches are a huge problem for me. My new Dr. is treating me well though and we are making progress.
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