PMR/Hashimoto's Enquiry

[ElizabethSarah]

Hi. Just to introduce myself. I started with PMR in July 2016 and joined the Salisbury PMRGCAuk support group. This has been invaluable. My symptoms seem to be under control but I also have Hashimoto's and so do my Mother (83) and daughter (16) and I am 53. I have fatigue, joint & muscle pain, slow foggy thinking, dizziness and headaches. I think I need to get better Thyroid hormone replacement but also believe that addressing the immune system problem is essential. I'm ploughing through books and community support groups like Thyroid UK. Is anyone else also trying to piece together this puzzle. My ambition is to reign in the raging autoimmune attack. The GP is skeptical but supportive.

[jinasc]

You could start here by going to this website and filling in the research surveys.

One has been running since August 2008 - the other, specifically for GCA only, has been running for about 7 years.

The latest one in the newsletter is being undertakend by the NHS Queen Elixabeth Hospital, R&D Dept The first mailing to those who have already registered went out yesterday. They need many more participants to make it successful. So if you suffer, loss of balance, dizziness,vertigo, tinnitus - in fact anything to do with 'Your Ears' and have PMR, GCA or both, please take the time out and take part.

pmr-gca-northeast.org.uk.

Two surveys under Research - click on the drop down box for the direct links.

and one in the Summer 2017 Newsletter contact details on the front page and full story on page 1.

[ElizabethSarah in reply to jinasc]

Thank you!

[PMRpro Ambassador]

Obviously the Holy Grail would be to find a way of addressing the immune system problem - but it will take more than community groups to solve that puzzle!

[ElizabethSarah in reply to PMRpro]

You sound like my previous GP! I am positive these groups are hugely helpful in our individual puzzle solving.

[PMRpro Ambassador in reply to ElizabethSarah]

Perhaps it is my scientific background - but I'm quite offended at being likened to your GP!!!!!

[ElizabethSarah in reply to PMRpro]

😂

[jinasc in reply to ElizabethSarah]

I am not positive, the support groups give support, the researchers do the hard work and they listen to support groups input.

There are over 800 orphan illnesses, most of them auto-immune.

That is one big puzzle for 'community groups........

[Rose54]

Hi

I have hypo thyroid for last 16 years on Levothyroxine B12tablets and other stuff GPs will only test for THS in UK which does not give a true picture .

My GP knows I function better under range and is happy for me to be under range but many GPs don't agree with this .

Thyroid UK is a good site but please remember many have found their way their as they need to supplement Thyroid meds and purchase these abroad .

I am not saying this is wrong but just that many function well on UK prescribed drugs as well.

All your symptoms could also be side effects of preds or PMR itself

[ElizabethSarah in reply to Rose54]

Yes. I'm down to 3mg pred now and my aches are not symmetrical like they were last year which is why I suspect the thyroid to be the root cause of my discomfort now. Slowly slowly I hope to prop up the various problems and slow down the destruction of my thyroid.

[SheffieldJane]

I have had Graves Disease since 1984, it never occurred to me that it might be contributing to my current symptoms. I am on 125 microgrammes of Levothyroxine. PMR on 7 mgs want to sleep all the time.

[ElizabethSarah in reply to SheffieldJane]

Treating the PMR with steroids last year had such a dramatic effect on many of my thyroid symptoms. Calming the inflammation which provoked the PMR soothed the thyroid symptoms too. I think the autoimmune attack on my thyroid might be spilling over to create other problems and I'm trying to slow or reverse this through better thyroid hormone replacement (NDT), diet (food intolerance and recommended foods to avoid or reduce) and vitamin supplements indicated by more comprehensive blood testing. This way I am hoping to replace the full spectrum of thyroid hormones my thyroid is struggling to produce so these hormones can help my cells do their various roles to keep me fit and well. This might sound irritating to scientists but I am trying to take a disciplined scientific approach to filtering all the available information.

[SheffieldJane]

It is a way of taking back control.

[SusanEleven]

I have Hashimoto's thyroid disease (diagnosed about 20 years ago) and PMR since February 2016. I'm in the US.

In the early years of Hashi's I went back and forth between hyper and hypothyroid. My medication level needed frequent adjusting. It eventually settled down. I had been on the same consistent dose for years but after a few months on pred for PMR I noticed my hands shaking and lots of heart palpitations. While I usually blame prednisone for everything it felt like a thyroid issue and the labs showed my thyroid was over corrected and I was hyperthyroid. We reduced my thyroid meds, the labs went back in range and the symptoms subsided. My rheum doc and my endo and I are assuming that while the pred is doing its job for my PMR it's also having an impact on my Hashi's since that's also an autoimmune disease.

[ElizabethSarah in reply to SusanEleven]

This is so helpful. Are you tempted to stay on a low dose of Pred? I'm down to 3mg and had been aiming for 2.5mg but I'm wondering if it's too low. The PMR is still in remission but the thyroid symptoms are getting worse. I'm having bloods analysed in a couple of weeks. Thank you again

[SusanEleven in reply to ElizabethSarah]

I'm not sure how I'll proceed. I feel like the Hashi's just chugged along in the background all these years eating my thyroid (there's definitely less tissue) while my Levoxyl eventually took care of the most obvious hypothyroid symptoms. Right now I'm focused on the PMR and Osteoarthritis, though interestingly my rheum doc just yesterday told me I may have to stay on a low dose of prednisone. One of these days I hope I wake up sharp with my former brain and can figure things out.

[Grants148]

I hope you will soon feel a lot better Elizabeth,you certainly are trying very hard to reign in this awful autoimmune attack.

[Rose1bud]

Can a person still fly if they are on steriods

[PMRpro Ambassador in reply to Rose1bud]

A lot of us do. I've flown to the USA/Canada a few times, China, South Korea and Malta.

[tgca in reply to Rose1bud]

I have flown 3 times on 30 mg and tapers... no problems but keep your Meds on you

[Ciar]

I came down with hypothyroid (dr says it's probably Hashimotos's) one year before I got PMR (October 2016). I also wonder what the heck is going on with my immune system and if I could somehow improve it.

[PMRpro Ambassador in reply to Ciar]

Once you have one autoimmune disorder it makes it more likely you will develop another than someone without one is. I'm not sure what you mean by "improving" your immune system - you certainly don't want anything to stimulate it as it is already over-active in a way you don't want and the drugs used to treat the symptoms are suppressing its activity.

I envisage autoimmune disease as a shop counter with loads of different symptoms on shelves behind. You turn up and an assistant hands you a random selection of symptoms. What label you get depends on which are most dominant. So your thyroid and PMR symptoms could all be part of one syndrome - Ciar's disorder so to speak.

[ElizabethSarah in reply to Ciar]

Hi Ciar. I'm taking Aloe Vera Gel to try to tackle 'leaky gut' if it exists. I'm buying it from a reputable supplier and believe it's not going to do me any harm. I'm also taking probiotics and looking into fermented foods as I believe a healthy guy is probably a good target. I'm also taking a supplement form of turmeric to calm inflammation. I'm seeing if cows milk might be a problem for me as it came up on a food intolerance test - but these tests are only indicators as they can be false positives. The only way of knowing is to exclude for 3-6 months. Pacing myself mentally and physically has been a priority for years but now the children are growing up I might have more chance of improving my efforts! I've stopped watching the 10 o'clock news! I'm trying to allow more time for sleep. I'm awaiting my blood tests for supplement advice and I'm keep a keen eye on what foods prevent T4 conversion and T3 absorption. BUT I'm determined to understand my body better and try to prevent more alarming symptoms from my rogue immune system. I spent 16 years being told by the doctor that my symptoms were untreatable or not identifiable even when it was agreed something was wrong with lots of problems. Not once was Hashimoto's discussed in seriousness, it was mentioned casually 16 years ago that my thyroid was mildly underactive but that it wasn't significant. Each symptom has been investigated and no cure has been successful. The horrendous PMR attack last year was in my opinion a shot over the bough. I cannot wait for the scientific community to come up with 'the holy grail' that might take 70 years and my great grandchildren might benefit. It is such a relief to realise these symptoms are related to autoimmune disease and I am going to try to tailor make a package to ease this, using these amazing forums, books, websites, GP's and holistic practitioners. Good luck x

[Ciar]

There are so many things to consider here. A healthy diet that doesn't aggravate symptoms, as you are trying is good. Making changes to avoid stress as you mention is definitely another goal. (I need to work harder at these) I am trying to avoid the many chemical exposures we face everyday (seems impossible at times), pesticides, cleaning chemicals, fragrances, drugs, etc. and trying to eat organic foods.

[ElizabethSarah in reply to Ciar]

It's all gentle incremental steps isn't it? Otherwise it is too huge. When I discovered I shouldn't have substituted soya for cows milk (prevents the thyroxine from being converted and absorbed) I just felt lucky I'd been advised sooner rather than later rather than feeling downcast. This road is going to be 2 steps forward 1 step back, all the way 😉.

[ElizabethSarah]

It's so hard creating a strategy with so many different unrelated elements and trying to remember it all with the brain fog!