Why 1-in-6-thyroid patients still feel bad on levo

[shaws]

Makes an interesting read.

peoplespharmacy.com/2015/01...

[lola1956]

Thanks for posting . I felt awful on levothyroxine . , I was laid in bed most days too tierd , lacking in motivation , hair fell out , dry skin , aching all over and massive weight gain that wouldn't shift . I self medicate t3 only since last September after 3 endocrinologist said no to it from nhs , I now feel great have lost over 2 stone and took control of my own health , I take all my vitamins and go to gym , I still have fybromyalga and chronic fatigue , polymyalgia and osteoarthritis but my life is hundred times better on t3 . One day hopefully doctors will see we were badly treated by getting no choice other than the dreaded levothyroxine . I know for some it works but it was killing me slowly

[Hidden in reply to lola1956]

When research finally and conclusively shows some T3 is necessary the doctors will not apologise, but will act as though that is what they had always believed.

In 2011 I had tests when I reported symptoms I though were hypo. I was told I didn't have hypo, but I had an unrelated cholesterol level of 7.8. I was sent to a consultant who told me I had a familial condition and could drop dead at any moment. I needed statins for life. I took them, developed extreme depression and an immediate menopause, and after six months decided I'd rather die relatively young than continue on statins.

This year I had a blood test which showed a cholesterol level of 7.8. This time they also did a ratio. It now reads: "Normal. No action."

So that was £375 spent on legal advice to set up a trust for my son ready for my imminent death well wasted.

!!!!

[shaws Administrator in reply to Hidden]

Aspmama

I'm also sorry you have had a unnecessarily worrying time when first diagnosed.

Before the blood tests and levothyroxine were introduced we were diagnosed on symptoms alone and one of the main ones was a higher cholesterol. They could also tell by other physical changes in their patients. Nowadays it's diagnosis alone by the TSH. We now know the damage statins can do but it's big Pharma who push their products and in the USA they give monetary incentives to prescribers.

What a worry for you that you had to prepare for your son if you had died.

Did you read Dr Malcolm Kendrick's The Great Cholesterol Con. He spoke at Thyroiduk's Conference last October. It is another eye-opener.

Also that the guidelines of the BTA state levo only and disregard the positive of T3 in some patients who aren't improving on levo.

I hope you are feeling better and I think you should be reimbursed for the money used to set up the Trust after the worrying diagnosis you were given.

[shaws Administrator in reply to lola1956]

Hi lola 1956

It's awful we have to buy our own life-saving hormones due to the doctors' reluctance and the BTA guidelines. I am also glad you are so much better. The medical profession just don't realise what it is to take certain hormones and feel so much worse that you don't want to take them.

My experience and others with the UK T3 was unsatisfactory (as well as it being exhorbitant cost to the NHS) and at times the stock runs out leaving you high and dry. Even though there is two other T3 that can be prescribed on a named-patient basis many doctors wont. Some UK batches had something wrong with them but because the 'liothyronine' was o.k. the ingredients which affected some of us were ignored and it was still deemed 'o.k.' I don't think it's right that they can vary anyt of the fillers/binders in the T3. At first you don't realise it's the T3 and assume you are having new symptoms.

[lola1956 in reply to shaws]

Hello shaws , I'm shocked that they were allowed to alter the ingredients , I never knew that . T3 to my doctor and any doctors I have spoken to is like a dirty word , there eyes roll they then talk to me like I'm a naughty three year old daring to question his words ? You really couldn't make it up , you have to be one of the 1 in 6 people to truly understand

[shaws Administrator in reply to lola1956]

lola you've had a very similar experience to me and I'm fine now. I do hope your other conditions gradually fade away as pain isn't good to cope with. Have you tried a tiny extra dose of T3 or does it give you problems?

[lola1956 in reply to shaws]

Hello shaws, I'm on 62 1/2 mcg now and have thought maybe I need a little bit more haven't upped dose for probably 4 months . My bp is down to more normal at 120/95 , do you think it may help ?

[shaws Administrator in reply to lola1956]

The only way to know if a small increase would help is to try it. Maybe a 1/4. I'm glad your blood pressure is down too. If you have signs of overstimulation drop back again. Also I hope your vitamins/minerals at an optimum level.

I increased my T3 but have dropped down again and have stayed at my dose now for a year and I am happy and well. So hope you are soon.

[Glynisrose]

According to who? Certainly not patients! Levo should not be used for long term use as the body will not accept it as a thyroxine substitute. Its T4 alone and why if the natural thyroid produces T1, T2, T3 and T4 does any doctor think T4 alone will work? The trouble is they either don't care or they have a vested interest.

[abby_mcc]

Thanks for posting this, I came across this article a few days ago as well. I'm trying to build my resources for changing my medications from 150mg Levothyroxine to something with T3, but my brain is constantly so foggy that doing this is a challenge in itself. I like that this article is informative but easy for me to understand!

[shaws Administrator in reply to abby_mcc]

I'm glad it was helpful and just hope the doctor is too. If you do decide to switch it is relatively easy but sometimes we have to try a couple of things. The first, if your GP is agreeable, would be to add some T3 on a trial basis. The new research says a 1 to 3 parts has been found the most benefitial, i.e. 1 T3 to 3 T4.

[Jazz70]

Thanks for posting this Shaws.I have recently had my Levo upped to 150 mg as my levels were down and I felt crap.For want of a better word I still feel crap ,achy joints,brain fog and horrendous migraines ,so tired at work it is a nightmare but can't sleep at night ,intrestingly dr said that not caused by thyriod ,hmm and to boot been diagnosed with ibs .I get given Mercury Pharma levothyroxine now I don't know if I am dreaming it but did I read once it is a really bad brand of levo .I get this mostly but occasionally get a different brand .So I am wondering is it the brand I get given.

[shaws Administrator in reply to Jazz70]

It could be the fillers/binders but I would suggest you ask your pharmacist what levothyroxines he can get as you're not sure if MP is making you feel worse. There is a few and tell him you're not getting on too well with MP and make sure he gets the same one each time if you decide to change. Sometimes it does take a while. Also I had the same symptoms as you - sleep was one of them too.

I wonder if you could have a low acid stomach problem as those of us with hypo are apt to get that. I have and take Betaine/Pepsin tablets when I have protein in the meal and have had no problems since. The GP gave me something like Gaviscon and it made me even more painful.

sott.net/article/265343-The...

Everything seems to be inter-connected. I suppose seeing that the thyroid hormones are needed from head to toe and if we are under-medicated or need an alternative we cannot really benefit.

[Jazz70]

Thanks so much Shaws that link was so interesting to read I can tick off so many of the symtoms. I have got to go up soon to get my levels checked so I will definitely bring up about Mercury Pharma. They keep changing between that and other brands I have had 50mg in one brand and the 10mg will be Mercury Pharma or vice versa.I will definitely try those two tablets ,you have been so much more helpful than the Dr's have even been ☺.

[shaws Administrator in reply to Jazz70]

I doubt the doctors are aware we can be affected by different brands. For instance some people can take Iboprufen but not Codeine tablets.

I only became aware, like you, when someone mentioned it on the forum about fillers/binders and getting more symptoms they hadn't had before. When I found the brand which suited me a lot, the chemist kept it aside unfortunately MP then discontinued that brand - Eltroxin - and many other people who were on it for more than 25 years then began to get symptoms but MP denied that the generic was different from Eltroxin but the patients knew differently.

The fact that with us it is hormones we are taking not medicine for headaches or other illnesses.

[Jazz70]

Thanks Shaws ☺.I an expecting resistence when I mention it as I had a battle to get the one dr to accept my levo needed upping to get my tsh back on track.I wonder if one brand is cheaper than the other but I am definitely going to point it out.As when I had different brand I Definately had a period where I felt at least a bit more human 😊.