Polymyalgia

[ib1703]

My wife suffers from Polymyalgia (or so the doctors/consultants say). Her ESR and CPR levels indicated this is what she has and is being treated for with Prednisone. However, 18 months on and she still suffers. I have just been diagnosed for under-active thyroid and looked her results. Her TSH level was very high at 8.09 but free T4 15.8 and "normal". Also her peroxidase antibody level was 247 and I understand it should be <50! Looking at the under active thyroid symptoms she has sensitivity to cold, muscle/joint aches and pains & tiredness. Anyone out there been diagnosed with Polymyalgia and it turned out to be thyroid issue or maybe my wife has two issues?

[mummytina]

Hi my mum has polymyalgia and also suffers from an under active thyroid and the two are connected as they are both auto immune diseases so I would get your wife to see if she has an under active thyroid

Good luck and I hope your wife gets it sorted

Tina

[shaws Administrator]

Thousands of people have been diagnosed with any other condition but the one they really have because their blood tests don't 'fit' the ranges or they've never been tested for a thyroid gland dysfunction.

Your wife is hypothyroid if her TSH 8.09 and with antibodies it would be an Autoimmune Thyroid Disease called 'Hashimotos'.

Many doctors would treat a patient with a TSH over 5 with symptoms but the guidelines say not to prescribe until the TSH reaches 10 which is really horrendous because of the unnecessary suffering.

Your wife will, hopefully, on the correct medication will gradually feel much better with the relief of her symptoms.

We have had lots of terrible stories on this forum that no-one who has never had such a disease would believe.

Ask for these tests to be done and it should be the earliest possible, and fast, if she was taking levo you leave about 24 hours between the last dose and the blood test (this would apply to you as well).

Some doctors or labs will only do a TSH but you can have these done privately but, hopefully, the doctor will agree.

"TSH = THYROID STIMULATING HORMONE

This hormone comes from the pituitary to stimulate the thyroid gland into making more hormone. TSH rises when the thyroid is struggling.

The approx. reference range for this test is 0.4 to 4.5.

TT4 = TOTAL T4

Thyroid hormones bound to proteins. TT4 lowers when the thyroid is struggling.

The approx. reference range for this test is 50 to 160.

FT4 = FREE T4

Thyroid hormones not bound to proteins. FT4 lowers when the thyroid is struggling.

The approx. reference range for this test is 10 to 24

FT3 = FREE T3

T4 converts to T3 and is the only thyroid hormone actually used by the body's cells.

The approx. reference range for Free T3 is 4 to 8.3

We at Thyroid UK believe that you need to know your Free T3 level too because this will often show low if you are not converting, and high if you have blocked receptor cells. Even if you are converting, the body needs the extra T3 that a normal thyroid produces. There has been some research to show that people feel better on a mixture of Thyroxine (T4) and Triiodothyronine (T3). Effects of Thyroxine as Compared with Thyroxine plus Triiodothyronine in patients with hypothyroidism – The New England Journal of Medicine Feb.11, 99 Vol. 340. (Click here for this article).

With all of these tests, your results could be anywhere within the range and you would be classed as "normal". If you are at the very edge of the range, either at the bottom or at the top, you could be classed as "borderline". Neither you nor your doctor truly knows what your normal is, if you did not have a blood test done before you became ill. There are also particular reasons why the blood tests remain in the normal range. If you are not converting from T4 to T3 or if your cells are not taking up the T3 normally, your T4 levels and your TSH levels will still show as normal.

The Broda Barnes Foundation tell us "Dr Barnes found that the primary reason for the inaccuracy of the blood tests for thyroid function is that the thyroid hormones are not utilized in the blood, but are utilized intracellularly. Therefore a patient can have enough thyroid hormones circulating in the blood to give a "normal" reading, but if the hormones are not getting into the cells, the patient will be hypothyroid. "

This is another link which will probably surprise you too:

thyroiduk.org.uk/tuk/testin...

Regards

[ib1703 in reply to shaws]

My wife had another series of blood tests and all are 'normal' except for Thyroid. Her TSH is 7.9 (range 0.27-4.2) and free T4 14 (range 12-22). Lab states "Borderline hypothyroidism. Suggest repeat TFTs in 3 months together with thyroid antibodies as these predict progression to overt hypothyroidism." TSH is way above range so don't see the "borderline". Why would she wait 3 months for another test when she's in pain or is that the PMR which doesn't seem to be responding to medication? Could she have both PMR and Hypo?

[Angel_of_the_North]

Well, polymyalgia just means "lots of hurting and soreness", but she could have told you that. Sounds like hashis. can she get a trial of levo. She has over range TSH and antobodies and symptoms.

[greygoose in reply to Angel_of_the_North]

I agree. Polymyalgia is a syndrome, that is to say : a bunch of symptoms. The symptoms must be caused by something. They just Don't look to find out what. But being hypo would do it! They blind you with these long, medical names, like Fibromyalgia, which just means pain in the muscles. The pain is real enough, but that doesn't make it a disease. It remains a syndrome.

[shaws Administrator]

It is amazing, in the UK, that some people have to practically beg for thyroid medication. Your wife already had a blood test previously in which the TSH was high 8.9 with clinical symptoms. The latest is TSH 7.9 (range 0.27-4.2) and free T4 14 (range 12-22). In other countries if your TSH was above 3 you'd be given medication.

Your wife is in pain and has antibodies also. The latest T4 is two digits above 12 so how can she possible have sufficient T4 to convert to the essential T3, the active hormone required in all of our receptor cells. A couple of links. The first one important

thyroiduk.org.uk/tuk/testin...

If you email [e-mail] for a copy of Dr Toft's article in Pulse online and highlight the line where it says (if antibodies present etc...

I wouldn't be surprised at all if the Polymyalgia is really hypo. It's like the phrase 'what comes first - the chicken or the egg'. You don't have to read this whole article but just to the point where it says that poly may well be hypo related.

ncbi.nlm.nih.gov/pmc/articl...

"I am not medically qualified in any way. I am qualified through my own personal experience with hypothyroidism and the statutory treatment regime of the BTA and their guidelines which didn't make me well. - in fact I had even more symptoms and pain but finally recovering my health with the help/advice of Thyroiduk.org.uk. and alternative hormone to levothyroxine and comment is not given in my capacity as an Admin of Thyroid UK or endorsed by TUK. Information on the forum is not intended to be a substitute for medical guidance from your own doctor."

[ib1703 in reply to shaws]

My wife currently takes 5mg of Prenisolene for PMR. All indications say that she has thyroid issue or both. Another blood test taken last week and seeing doctor tomorrow. I believe my wife should be on Levo based on past results. My question is and I know you are not medical experts (but experts in other ways!). Any one out there taking Pren and Levo together? Is it OK to start Levo as a trial for a couple of months and stop? Any withdrawal if just stopped Levo?

[glen56 in reply to ib1703]

Yes I take both.

[ib1703]

Hi, Thanks for your response. You are right her TSH level was very high at 8.09 and free T4 15.8 back in July 2013. In Oct 2014 TSH went down to 2.61 but no free T4 test carried out! Now it's up again - TSH 7.9 and free T4 14. What will waiting another 3 months make the difference on! This has gone on long enough.

[ib1703 in reply to ib1703]

My wife is seeing the doctor today to discuss review of polymyalgia and whether there's a thyroid issue (instead or as well). Hasimoto seems likely scenario. They are still hinting on let's see approach in next blood test - in other words more delay. Personally, I think she should push for Levo dose of some kind. Peroxidase antibody level was 247 in a previous test and I understand it should be <50. At this meeting I would like to see agreement on which tests to run - lets get as much done and stop messing. Plus getting onto Levo. Anyone have a view on what should be the starting dose of Levo?

[Marz in reply to ib1703]

Sorry you are being so messed around by people who should know better.

I was diagnosed with PMR back in 2000 - when my GP wanted me on steroids before leaving the surgery. I refused. I saw a Rheumatologist privately where the PMR was downgraded to fibromyalgia. I was still not happy - but as no treatment was given I just carried on. I just blamed it all on my past health issues.

We retired to Crete early in 2004 and in 2005 I was diagnosed with Hashimotos. And so my journey began - a bumpy ride to wellness.

OK I am still around on this forum - just in case I learn something new that may help me even more.

Happy to help - but do look at my edited profile by clicking onto my name - so you realise I am not a medical person - just a Hashi's sufferer

[ib1703 in reply to Marz]

How did they carry out the diagnosis of Hasimoto...just TSH and TPO tests?

[Marz in reply to ib1703]

I had the full profile done - TSH - FT4 - FT3 - Anti-TPO - Anti-Tg. The first three were in range - or what they would call normal in the UK. My anti-bodies were VERY high and so I was treated with T4/Levo. My GP said the thyroid needed support whilst under attack from anti-bodies - which actually made sense to me !

Then I began to read and read - and learn

[shaws Administrator in reply to ib1703]

50mcg is a starting dose of levo with 25mcg increments every six weeks approx until we feel much better - not until the TSH is somewhere in range as most doctors 'think'. Most feel well with a TSH around 1 or lower or suppressed and despite what doctors have been told, etc we won't get osteoporosis. We are apt to get other more serious problems if they keep levo too low - when the doctor stops increases because the TSH is somewhere within the range and we still have symptoms.

It does seem like hashimotos also called an Autoimmune Thyroid Disease and as you say, your wife has antibodies. It is usual with hashi's to have 'swings and roundabouts' sometimes too much and sometimes low.

Tests suggested, TSH, T4, T3, Free T4, Free T3, antibodies, Vit B12, Vit D, iron, ferritin and folate.

Blood tests should be at the earliest and fast (water can be taken) and when given levo around 24 hours should be allow between the last dose and the blood test.

In some countries people are given levo when their TSH is around 3, with symptoms. In the UK doctors are told to wait until the TSH is 10 (how they can make a guideline like that I don't know). Some doctors will prescribe with symptoms around 5 or 6.

"I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions".

I have just been notified of your response today so I'm sorry it's taken a long time for me to reply.. There have been some hiccups with HU lately.

[sharonsandle]

Hi. I was treated last year for hyperthyroidism,ending up with radiodine treatment. I was then put on levothyroxine for hypothyroidism but was left feeling awful. After more blood tests,I am now on prednisolone for polymyalgia. From what I understand its all connected as its to do with the autoimmune system. I just want to feel better!