Re: severe muscle and joint pain

[Guest guest]

HI NICKY

I suffered from this muscle and joint pain which came on after a fall on a bus

last June, but it came on gradually starting from the hips and up to my

shoulders.In the end I had difficulty getting out of a chair, as struggling

with this caused more pain in other areas. The muscles get inflamed bought on by

the shock of the fall. My CRP and ESR went up, then to make matters worse in

having to stay in hospital overnight, the patient in the next bed had a nasty

chest infection, which I must have picked up. Within a few days of that I ended

up having to go back in hospital as an emergency with pneumonia, and this caused

the muscle pain to get worse (more stress) and my CRP went up to over 200. I

then had to have two lots of antibiotics and then put on Prednisolone for the

muscle pain. At this point I went to see DR PEATFIELD and he said that although

my GP was using Prednisolone for this muscle pain which was said to be

POLYMYALGIA, he was also treating my Adrenal Glands.

I only have a small amount of pain in my shoulders now and can get about. I have

blood tests tomorrow to check the CRP AND ESR to see if the inflammation has got

less.

I think before they treat patients with Thyroxine they should check the Adrenal

Glands and treat them first.

I have also been seen by a Rheumatologist, who confirmed by symptoms that it was

Polymyalgia, and what I have already said.

Kathleen

>

> hi my name is nicky and i`m a new member, i was diagnosed as hypothyroid in

november and put on thyroxine 50 grms,

[Guest guest]

Nicky,

Welcome to the forum... First thing, do you have any of the test results from

the doctor? Always get results from him... you want numbers, with reference

ranges, not opinionions (like 'normal').

If you are taking levothyroxine (T4), which is a storage hormone, it has to

convert into Liothyronine (T3) before your cells can use it. You need good

levels of iron, folate and B12, healthy levels of zinc and copper, Magnesium,

selenuim and D3 for conversion and uptake to take place.

If you aren't converting the t4 into t3, it can build up and cause joint pain.

Dr Lowe has a website and it is his belief that fibromyalgia is linked to a

shortage of T3. Have a look here: http://www.drlowe.com

Have a look in the files on the forum and go back to your doctor and get your

test results. Under the terms of the 2001 Freedom of information act, he has

to give you the results and the numbers, you do not have to give a reason for

having them.

When you get the test results, post them on here and we'll see if there is an

obvious problem....

It seems daunting at first, but we've all been there, read as much as you can,

and ask as many questions on here as you need to.... collectively we have lots

and lots of experience.......

xx

>

> hi my name is nicky and i`m a new member, i was diagnosed as hypothyroid in

november and put on thyroxine 50 grms, my symptoms just get worse but doctor

says blood test back in normal range,

[Guest guest]

Hi Nicky,

Have a look at this and you will see what is happening re the possible fibromyalga diagnosis you have been given.

You are now in good company and you will get help here on this forum.

Best wishes

Mandy

[Guest guest]

Hi Nicky, and hi to everyone. I'm also new here, only joined yesterday and

haven't stopped reading the site since then! I was actually looking for

information on muscle pain and what the causes might be and somehow I ended up

finding this site. I'm glad I did - it's like a light has been switched on and

things are suddenly starting to make sense. To be honest, I feel a bit silly

now for not connecting my symptoms to my thyroid condition, but my GP never made

the connection and as my results were always normal I didn't either.

I was diagnosed hypothyroid 12 years ago at age 36; started off on 50mcg

thyroxine which was gradually increased to 200mcg and has stayed the same ever

since. My results are always " normal " even though I still have many hypo

symptoms - fatigue, lack of stamina, hair falling out, weight gain, sleep

problems, chronic anxiety (one of the worst symptoms for me) and for the last 3

years muscle pain. (The list goes on....)

For me, this is one of the most distressing symptoms as the effect it has had on

my mobility makes me feel old before my time, which makes me adamant that I'm

going to get to the bottom of it! Although my GP did tell me at one point that

I might have to accept that I might never find out what is causing the pain! I

think that was actually the last time I saw her, which is over a year ago.

Since then I have seen a physio, a chiropractor, an osteopath, an acupuncturist,

massage therapists even tried chinese herbs! Some gave relief in the short term

but the pain always returned. Painkillers don't help either. I've spent a

fortune trying to find a cure. This is why I'm so glad I found this site, and

I'm fairly certain now that the pain is connected with the thyroid condition.

What's worrying me now is confronting my GP with my findings and suggesting to

her that all my medical issues are connected with my thyroid (which is of course

normal!!) I think I am going to put it in writing to her instead of seeing her

face to face. Either way there's likely to be tough times ahead but finding

this group has given me hope and I'm looking forward to sharing experiences with

everyone and hopefully making some new friends.

Gill x

[Guest guest]

Hi Nicky, Welcome to the wacky world of hypothyroidism. first, you doc says that you are now in the 'normal' range. What are your TSH and FT4 levels, many docs are far too keen to accept anything in range as OK. You can feel very different at one end of the range than the other. Many docs also tend to undermedicate- or at least prescribe as little as they can get away with. There is an opinion that says that fibromyalgia is just innapropriately medicated hypothyroidism- joint pains are often associated with inability to convert T4 to t3, so the unconverted T4 hangs around causing problems- you would lave a lower FT3 than FT4 is that was the case- try to get doc to test FT3 ,but this is often a problem as many docs don't believe this is necassary. What helped me was to reduce the amount of T4 and replace with sufficient T3. within 3 weeks all pain had gone ,never to return- however I'm still to get this NHS funded. Have a look at http://www.drlowe.com and do a search there for fibromyalgia. thyroid treatment From: nickymalleson@...Date: Wed, 27 Apr 2011 17:41:15 +0100Subject: severe muscle and joint pain

hi my name is nicky and i`m a new member, i was diagnosed as hypothyroid in november and put on thyroxine 50 grms, my symptoms just get worse but doctor says blood test back in normal range, apart from the weight piling on and the exhaustion , brain fog short temper etc my major problem is that my mobility is really getting worse .I have had xrays nothing very notable I`m 58 waiting for MRI results possible fibromygelia but missing trigger points rhumatology specialist hospital says that it is diagnosis by elimanation. so my question is do other people have terrible muscle and joint pain and have they found anything that helps???second question I live in the GL5/6 area of Gloucestershire and would like to know of a good GP and specialist endocrinologist please, thanks in advance

[Guest guest]

Hi gill, Yes, do put in in writing and keep a copy, then you can carefully put exactly what you need to say, rather than the discussion being derailed before you have said everyhing that you need to. Ask for a referral to an endo of your choice, as most docs are very reluctant to prescribe T3 ( which can be a magic pill) unless backed up with an endo. Post your letter here first ( no names) if you would like us to make suggestions on wording. > thyroid treatment > From: drakegillian@...> Date: Wed, 27 Apr 2011 22:59:25 +0000> Subject: Re: severe muscle and joint pain> > > Hi Nicky, and hi to everyone. I'm also new here, only joined yesterday and haven't stopped reading the site since then! I was actually looking for information on muscle pain and what the causes might be and somehow I ended up finding this site. I'm glad I did - it's like a light has been switched on and things are suddenly starting to make sense. To be honest, I feel a bit silly now for not connecting my symptoms to my thyroid condition, but my GP never made the connection and as my results were always normal I didn't either. > > > What's worrying me now is confronting my GP with my findings and suggesting to her that all my medical issues are connected with my thyroid (which is of course normal!!) I think I am going to put it in writing to her instead of seeing her face to face. Either way there's likely to be tough times ahead but finding this group has given me hope and I'm looking forward to sharing experiences with everyone and hopefully making some new friends.> > Gill x> > > > > > > > > ------------------------------------> > TPA is not medically qualified. Consult with a qualified medical practitioner before changing medication.> >

[Guest guest]

Hi and thanks for your response.

I phoned the surgery earlier today to ask for the results of my last three blood

thyroid tests. These are the results I was given:

Sept 2008 - TSH: 5.53 T4: 18

Aug 2009 - TSH: 0.37 T4: 19.00

Oct 2010 - TSH: 0.68 T4 - not tested!!

I asked why my T4 wasn't tested but the receptionist didn't know and I'd have to

speak with the practice nurse or my GP. I've never been tested as far as I know

for T3. During this time my dosage has remained at 200mcg of levothyroxine.

This is the first time I've asked for a detailed result of my tests, as I always

trusted that the " normal " result meant everything was working normal. I know

that sounds a bit dumb but better late than never!

To be honest, due to my chronic (and fairly severe) anxiety a face to face visit

with my GP is out of the question, so it's definitely going to have to be a

letter... and even the thought of her receiving and reading it makes me anxious!

Anxiety and severe muscle pain (amongst other symptoms) are making my life a

misery, so I owe it to myself and my family to get myself well again.

I do realise that in 2008 the TSH looks high and I do recall visiting my GP as

my anxiety was very bad. I suspected adrenal fatigue from googling my symptoms

- heart palpitations, only sleeping for 2 hours at a time, feeling very anxious

and over-emotional etc. It made sense to me as I'd been under a ridiculous

amount of stress at the time, mainly at work. When I mentioned this to my

doctor and told her that I felt like I had too much adrenaline in my body, she

looked at me like I'd just grown another head! Then wrote me a script for beta

blockers and suggested anti-depressants.

If anyone has any comments on the above results, it would be greatly

appreciated.

Gill x

>

>

> Hi gill,

> Yes, do put in in writing and keep a copy, then you can carefully

put exactly what you need to say, rather than the discussion being derailed

before you have said everyhing that you need to. Ask for a referral to an endo

of your choice, as most docs are very reluctant to prescribe T3 ( which can be a

magic pill) unless backed up with an endo. Post your letter here first ( no

names) if you would like us to make suggestions on wording.

[Guest guest]

Do write to your GP Gill. Tell her that you are writing because

you are now determined to do whatever is possible to find out the cause of your

continuing symptoms. Tell her that you have been doing research and found that

levothyroxine (T4) is a prohormone, meaning it is mainly inactive and that it

has to convert through the liver, kidneys, skin, brain and other thyroid

hormone receptors throughout the body to the ACTIVE thyroid hormone

triiodothyronine (T3). Tell her that you have learnt that there are many

conditions that stop this conversion and you can produce a list of these if she

wishes, and that you would like a trial of the thyroid hormone Lyothyronine

(either in addition to your levothyroxine, or T3 alone). Tell her that if she

is not prepared to do this, you would like a referral to an endocrinologist of

your choice (I will send you a list of 'good' doctors recommended by our

members). You are allowed to go outside of your area.

Ask first though that your levels of certain vitamins and

minerals are tested to see whether any of these are low in the reference range,

because again, if any are low, the thyroid hormone cannot be utilised at the

cellular level until whatever is low has been supplemented.

These are ferritin, vitamin B12, vitamin D3, magnesium, folate,

copper and zinc. Once you get the results, post them here together with the

reference range for each of the tests done.

Check out also the 'Associated Conditions' in our web site www.tpa-uk.org.uk under Hypothyroidism and

read about these. it is quite likely that your muscles are not getting the T3

to make them function, and once you start taking this, the pain will gradually

disappear, as my severe pain did when I stopped thyroxine and started on

natural desiccated porcine thyroid extract - this contains T4. T3, T2, T1 and

calcitonin.

Don't worry about consulting your GP - your doctor is there to

HELP you and your health is number one priority, whatever you have to do. You

are not there to make your doctor happy, you are there to get the help and

support you need.

Luv - Sheila

I was diagnosed hypothyroid 12 years ago at age 36; started off on 50mcg

thyroxine which was gradually increased to 200mcg and has stayed the same ever

since. My results are always " normal " even though I still have many

hypo symptoms - fatigue, lack of stamina, hair falling out, weight gain, sleep

problems, chronic anxiety (one of the worst symptoms for me) and for the last 3

years muscle pain. (The list goes on....)

For me, this is one of the most distressing symptoms as the effect it has had

on my mobility makes me feel old before my time, which makes me adamant that

I'm going to get to the bottom of it! Although my GP did tell me at one point

that I might have to accept that I might never find out what is causing the

pain! I think that was actually the last time I saw her, which is over a year

ago. Since then I have seen a physio, a chiropractor, an osteopath, an

acupuncturist, massage therapists even tried chinese herbs! Some gave relief in

the short term but the pain always returned. Painkillers don't help either.

I've spent a fortune trying to find a cure. This is why I'm so glad I found

this site, and I'm fairly certain now that the pain is connected with the

thyroid condition.

What's worrying me now is confronting my GP with my findings and suggesting to

her that all my medical issues are connected with my thyroid (which is of

course normal!!) I think I am going to put it in writing to her instead of

seeing her face to face. Either way there's likely to be tough times ahead but

finding this group has given me hope and I'm looking forward to sharing

experiences with everyone and hopefully making some new friends.

Gill x

1 of 1 File(s)

Why thyroid hormone stops working (2).doc

[Guest guest]

have you looked at vitamin d?

http://chronicfatigue.about.com/b/2011/01/25/vitamin-d-for-fibromyalgia-chronic-\

fatigue-syndrome.htm

perhaps you have another deficiency, and or aren't on enough thyroxine or can't

convert it properly, some people need more t3 or a natural thyroid containing

t3, t4 and all the other ingredients

Look at the hertoghe questionnaire in this link and see what else you may be

deficient in:

thyroid treatment/files/MEDICAL%20QUES\

TIONNAIRES/

chris

>

> hi my name is nicky and i`m a new member, i was diagnosed as hypothyroid in

november and put on thyroxine 50 grms, my symptoms just get worse but doctor

says blood test back in normal range, apart from the weight piling on and the

exhaustion , brain fog short temper etc my major problem is that my mobility is

really getting worse

[Guest guest]

Hi gillian, Are you still taking betablockers? they have the well known effect of reducing T4 to T3 conversion- which is why they are used to help control hyperthyroidism where there is over production of thyroid hormones. T4 resultls look fine, but of course this is the inactive prohormone that will do no good at all unless you can convert it to T3. You say you've had feelings of too much adrenalin- have a look at the adrenal file in the forum files- it may be that you have a problem there too- thyroid and adrenal do go hand in hand at times. > thyroid treatment > From: drakegillian@...> Date: Thu, 28 Apr 2011 11:19:45 +0000> Subject: Re: severe muscle and joint pain> >:> > Sept 2008 - TSH: 5.53 T4: 18> Aug 2009 - TSH: 0.37 T4: 19.00> Oct 2010 - TSH: 0.68 T4 - not tested!!> > I asked why my T4 wasn't tested but the receptionist didn't know > > I do realise that in 2008 the TSH looks high and I do recall visiting my GP as my anxiety was very bad. I suspected adrenal fatigue from googling my symptoms - heart palpitations, only sleeping for 2 hours at a time, feeling very anxious and over-emotional etc. It made sense to me as I'd been under a ridiculous amount of stress at the time, mainly at work. When I mentioned this to my doctor and told her that I felt like I had too much adrenaline in my body, she looked at me like I'd just grown another head! Then wrote me a script for beta blockers and suggested anti-depressants. > > > Gill x> > > > > > ------------------------------------> > TPA is not medically qualified. Consult with a qualified medical practitioner before changing medication.> >

[Guest guest]

Hi and thanks for your response.

Yes, I take 80mg of timed release propranolol every day. These were prescribed

purely to ease the symptoms of anxiety - I don't (as far as I know) have any

heart or blood pressure problems.

My GP never said that there oculd be contra-indications with thyroid meds and in

fact there is no mention of it on the leaflet which accompanies the propranolol

either! So, thank you for pointing this out.... it's just another piece of the

jigsaw that I'm finally beginning to put together! I'm hoping to be able to

wean myself off them in the future.

Gill x

> Hi gillian,

> Are you still taking betablockers? they have the well known

effect of reducing T4 to T3 conversion- which is why they are used to help

control hyperthyroidism where there is over production of thyroid hormones. T4

resultls look fine, but of course this is the inactive prohormone that will do

no good at all unless you can convert it to T3.

>