Fibro diagnosis.

[Mudshake]

Hi all , had been diagnosed with low thyroid , but as levothyroxine made my heart go nuts , they stopped prescribing the tiny dose I was on . My levels are only a '' bit low '' so they have now diagnosed Fibromyalgia . Looking at kelp , but dessicated thyroid .. ? where from , and is it worthy ? thanks in advance .

[Marz]

Hi and .... Welcome to the forum ! Do you have your thyroid test results you could post with ranges and then people can comment. Fibro can be due to LOW T3 so if it wasn't tested then you will not know for sure.

Maybe you are low on Iron - Ferritin - Folate - B12 - VitD - these need to be tested and optimal in their individual ranges. I am anticipating you will be low on them all.

Sometimes people can react to the fillers in the T4. I do feel that nothing will work unless you have the building blocks in place - the vitamins and minerals I have mentioned above.

Nothing works fast in the world of thyroid and we have to be very patient. How long do you think you have been underactive ? - or had a thyroid problem ? Maybe longer than you think.

Have you had your thyroid anti-bodies tested ? You may have Hashimotos. So much to learn and understand - so take a step at a time and lets unravel this mystery......

[Mudshake]

Hi ,I'd say I've been ill for about ten years tbh , I don't have ranges I can post but the docs going to do new bloods shortly to see where my T4 level is at 6 weeks after stopping all Thyroxine . I've been telling them for years to test deeper , as all the women in my family have underactive , and I have ALL the problems that go with . I don't eat enough to be this fat ! . Apart from anything else , joint pain , sleep issues , fatigue/fog .. all of it. Its hell . I used to be active , I'm borderline disabled now . At 45 years old .

I'll speak to doc about vitamin testing and antibodies , what is NDT ?

Thanks for replying

[shaws Administrator in reply to Mudshake]

You have to click the Reply so that the person is emailed you may need a reply, otherwise you may wonder why.

The most important thing to remember if taking thyroid hormones is that you should allow 24 hours between the last dose and the blood test which should be as early as possible. (I know you've stopped at present). Also it should be as early as possible.

I was forever in and our of the A&E, ambulance trips due to levothyroxine. I am fine now and was on Natural Dessicated Thyroid Hormones (NDT) which contain all of the hormones a healthy thyroid gland would have. I was good on NDT but am now on T3 only as GP would prescribe NDT.

It is made from pigs or cows thyroids and is more synergystic with our human body than synthetic levothyroxine. I doubt your doctor will prescribe as the British Thyroid Association have made False Statements about it. It has been in use successfully since 1892 but the pharmaceutical companies have been very powerful with monetary incentives particularly in the USA and it has spread throughout the world now with the result that some people are permanently unwell and have developed other diseases.

If you are hypothyroid you need thyroid hormones. A hypoallergenic NDT is Nature-Throid or Westhroid. These can be prescribed on a named patient basis and there are others as well.

thyroiduk.org.uk/tuk/treatm...

thyroiduk.org.uk/tuk/treatm...

This was a response to the BTA and despite 3 annual reminders, Dr Lowe didn't get any response to his Critique. It would appear that minds are closed so the suffering can continue for many people.

thyroidscience.com/Criticis...

[Mudshake in reply to shaws]

Thanking you , lots of food for thought x

[Glynisrose]

Fibromyalgia is just poorly treated under active thyroid.

[FoggyMoggy in reply to Glynisrose]

Fed up with responses like this. It's not helpful!

[Reykua]

Hi Mudshake,

I'm intrigued by your story as I had a similar experience and I'm still convinced that the diagnosis is Not correct and they just can't be bothered to dig deeper.

Having said that, it may be useful to join the Fibromyalgia forum right here on HealthUnlocked. You'll receive forum posts from both groups and be able to check in with anyone you feel has information that you can relate to - which is what I do.

I was re-diagnosed three years ago. It was the 'strangest thing' because the Rheumatologist I was referred to thought I had SLE - Lupus but because I didn't have any corresponding rashes, decided I had Fibro. This is after years of suffering from Endometriosis and pcos.

Hoping you find the Fibro forum as useful and helpful as this one.

Wishing you the very best going forward - Fibro, if that's what we really have, is as awful as any thyroid or autoimmune condition can be.

[Mudshake in reply to Reykua]

Thank you , wishing you the best going forward too x

[Mudshake]

I see the reply button , have read all with great interest and hope .. really * bad * day today woke up in agony all over , barely able to function and close to tears . Just want to cut the grass and get on with my work , but nothings working on any level . Will ring docs tomos with some new suggestions to take forward , so thank you all very much . Glimmer of light to talk here . Will check out the fibro forum too .. again , many thanks x

[shaws Administrator in reply to Mudshake]

This is a link from Dr Lowe who was also, before his death, an adviser to Thyroiduk.org.uk. He was also Director of the Fibromyalgia Research Foudation:

web.archive.org/web/2010103...

web.archive.org/web/2010081...

His fibromyalgia patients were prescribed T3 at higher doses and relieved their symptoms. They also took nutritional supplements and exercised to tolerance.

[Mudshake in reply to shaws]

I'm going to print that and take it to my Gp , plus other bits of information here .. I'm so glad I came across this forum , my quality of life is bloody awful . I used to be a landscape gardener , ,and it feels like my body has shut down. The pain generally is unbelievable , never mind everything that goes with ... much food for thought .

[shaws Administrator in reply to Mudshake]

Doctors follow the guidelines but some occasionally do prescribe on a named-patient basis - most are frightened of repercussions and losing their licence.

Cytomel T3 can be prescribed on a named-patient basis.

Re T3 the MP fillers/binders didn't agree with me. There is a T3 that can be prescribed on a named-patient basis (my GP wouldn't) . Maybe your Endo would agree - even if on a trial basis for about 4 months. If yours is due to thyroid hormone resistant you'd need a higher dose than is normal but, of course, you would start gradually. Our doctors are apt to stop meds when TSH reaches 'normal' and if we take T3 only our TSH might be much lower. Don't forget the blood tests were introduced for the use of levothyroxine one not liothyronine (T3) so, as far as I am concerned it is how we feel, free of pain and leading a 'normal life'. I don't take too high a dose as I am not resistant.

thyroiduk.org.uk/tuk/treatm...

thyroiduk.org.uk/tuk/treatment

/named_patient.html

P.S. If you are already on levothyroxine you switch to T3 and the ratio is 100mcg of T4 is equal to 25mcg of T3.

[Mudshake in reply to shaws]

Ok , interesting .. what issues are common with thyroxine ? for me , it was my heart ,thought it was going to finish me off ... A friend of mine recently complained of a painful elbow , it was a marker for me how gradually normal it has become to be in pain all over ... I'd love to only have one painful joint, that would be amazing . I shall research considerably deeper on the T3 stuff , the depression that comes with all of this makes it hard to care enough to dig deeper ... its a horrible pervasive condition .

[shaws Administrator in reply to Mudshake]

Not everyone has the same experience of levothyroxine. Some feel well when they reach an optimum. For me, like you, I had frequent palpitations, had to call the ambulance several times, and tried to cope at other times myself. I also felt extremely ill. I also had widespread muscle/joint pain and could only shuffle and couldn't step onto a pavement, nor comb my hair. I am now well.

re depression, T3 has also been found to be helpful. I feel, and am not medically qualified, that if we do have a thyroid gland dysfunction that maybe T3 will also help too. I was never depressed, thank goodness.

stopthethyroidmadness.com/t...

ajp.psychiatryonline.org/do...

Don't try to take in all the information in the links all at once. Take your time to read and absorb. Also if you discuss anything with your GP or Endo, remember they might not have come across these links before. So it would be good just let them read and digest what you think might be helpful for you to get better.

Many of us have to try several types of thyroid hormones and some people don't always get an instant result and have to still search.

[Mudshake in reply to shaws]

I am learning so much here .

[Mudshake in reply to shaws]

Can't thank all of you enough for all this info , I should have dug deeper , it just felt hopeless ...

[shaws Administrator in reply to Mudshake]

That's why to have access to the internet is a revelation. We can get informed because we are aware the medical medication, with regard to thyroid hormones, are unaware how best to treat/diagnose us but better still when it's a forum like this when we are not getting well, some one of the members have experienced this or that and it is helpful to someone else.

I hope you pick up soon.

[Mudshake in reply to shaws]

Thank you , all of you

[Clutter]

Mudshake, low thyroid can cause fibro type pain. Levothyroxine may have caused your metabolism to speed up which may have caused the racing heart but sometimes Levothyroxine does cause adverse effects. In my case Levothyroxine caused palpitations, racingheart, tremors and whole body pain and a host of other problems and I was unable to convert sufficient T3 on lower doses. Adding Liothyronine (T3) improved my FT3 (it's low T3 which causes hypothyroid symptoms) but more importantly calmed the adverse effects which Levothyroxine only caused.

Not all GPs can prescribe Liothyronine. Some CCGs are designating it as a 'red light drug' and insist it should only be prescribed by speciaists.

[Mudshake in reply to Clutter]

Ok , so new bloods tomos now , will book with my Doc who actuallylistens .. for results and plenty of new info to discuss with him thank you .

[FoggyMoggy]

Do join the Fibro boards, Mudshake. They are a friendly bunch

[Mudshake in reply to FoggyMoggy]

I have joined one , many thanks

[FoggyMoggy in reply to Mudshake]

Nice one

[Mudshake]

Anyone followed any internet diet plans ?forefronthealth.com/lp/thyr... ... Its spamming my inbox , but wondered if any of it could be backed up by anyone on here ?