HYPOTHYROIDISM and PMR

[Estellemac]

As I have too much time on my hands to think and add to my list of what else could be wrong with me I called the doctor to ask about my blood test results. I asked if she thought I have stopped loosing weight due to a sluggish Thyroid? She said It's only borderline .6 so no that probably wasn't it. I explained my husband controls my diet as I am house bound, he also shops and has lost a lot of weight himself recently to help me for my hip replacement surgery. I was doing well till now? Nothing changed diet wise so I will repeat it to check it hasn't gone up. So far so good. The then DR Dabia asked me about steroid dosage she said my Rheumatologist was concerned about the amount of steroids I was taking and asked did I not read his letter. I said no he didn't send me a letter he cancelled my request for a consultation and said you can manage it. Dr Masai told me about the letter and asked me did I know how much this process costs! I told him no but didn't mind really as I was entitled to an NHS consultants referrall with PMR after 40 years of NI contributions? What's interesting is Pred is on a monthly repeat for 10mg a day that they issue. I told her how if I reduce any further (on 7 mg now) I get symptoms back that affects my mobility that is massively impaired already due to my impending Total Hip Replacement surgery. She said you should be reducing 1mg a month though. I answered I wasn't sure how that would affect me post option as I have to move about and any less than 7mg makes me hurt. She then said what did I call for specifically? Answers? Solutions? Consultation on best way forward from a medically qualified person? Help to deal with my health? Then I said to tell you the truth I don't know because I am no further forward in this discussion. Then I asked do I need a fasting blood test for TFT and can you check Inflammatory markers for my PMR at the same time. That will help with the steroid dosage. She said no we will just do the Thyroid test so it's not a fasting one. So I said ok and hung up.

You probably don't have any answers for me out there but I feel better for venting my frustration. Did I ask too much? Did I confuse her? Is she too busy to listen? Had she got stuff going on much more important than my whinging? Anyway it's not like I will go away any time soon. I will start a new discussion next week and change the subject matter and topic around. Perhaps do it more like a counselling session with open questions following up with a few leading suggestions and ideas..

Thanks to anyone who is bored enough to read this. If it wasn't for this site I would get seriously depressed angry and upset.

I now have my headphones on in the garden going to the special place in my head where I am 8st 30yrs younger pain free and incredibly healthy.

[DorsetLady PMRGCAuk volunteer]

Hi Estellemac,

You should know by now, you can only ask the GP one question at a time - they're likely to go into overload!

Yes, they do have a lot going on, but don't we all!

I can just imagine her going into Dalek mode - round and round in circles until she internally combusts!

As you can see, I've got too much time on my hands today as well.

Enjoy your own little world for a time.

[Estellemac in reply to DorsetLady]

Got Daleks in me head now laughing raucously 😂😂😂

[DorsetLady PMRGCAuk volunteer in reply to Estellemac]

Good!

[camerashy in reply to Estellemac]

My Doctor when I first went to with all my symptoms kept saying "how bizarre..how bizarre" I went back a few weeks ago and I said to my husband, if she says how bizarre again I will scream....she did of course but I managed to stifle my scream!!

[Estellemac in reply to camerashy]

It's so funny when they do that!! Kudos to you for self control 👌

[jinasc]

I bet she got up out of the wrong side of the bed...........

What I once did was type a load of questions and when I went for the appt, I just walked in and said, hi I am not stopping as I don't want to waste your time talking to me, how about your read this list instead of me staying here for 10 minutes and when you get your head around it all, just scribble the answers down in your illegible handwriting and send it to me.........he laughed, we shook hands I left and got an email with the answers the next day.

I should explain, he was the GP who saved my sight and we had a good relationship until he retired, I do miss him.

[Estellemac in reply to jinasc]

Ace love it. It's good to have that rapport. I think I need to build up a relationship and give them a bit more respect. Just because they don't work miracles when I want one doesn't mean when they see an urgent situation that needs attention they will ignore it. This doctor did diagnose my PMR instantly no messing. I think I had forgotten that as I was really impressed at the time once the steroids kicked in. I will try your list though defo.

[Hidden]

Last time but one I went with a list of 5 things. I got 4 sorted including the scan I had last week. Thev5th breathlessness was all but ignored so I booked another appointment to address sinusitis that I have...and which was worse. Got antibiotics. Those 2 visits were first when I didn't leave frustrated and felt like relationship developing. So I have successfully used both techniques.

I was borderline for thyroid for about 5 years. Kept going into hypothyroid territority then 2 weeks later back in normal range. Eventually gave up the ghost and I started putting weight back on after significant loss and no dietary changes and of course ended up on levothyroxine. My gp automatically re-tested when borderline.

[Estellemac in reply to Hidden]

So did the the levothyroxine stop weight gain and you levelled out? What I didn't get was she didn't think it was related let alone important but they are first to tell you about being overweight.

[Hidden in reply to Estellemac]

It's hard to tell. I came down with PMR and was dx within 6months of starting thyroxine. The combination of pred and immobility for first part of year probably worked against me especially as blood sugar rose.

I have lost 3kgs in past two months since I cut way way down on carbs, especially refined carbs like bread pasta etc. So things are coming together. I am only on low dose of 50mg so don't know how much it helps. But I did have fatigue prior to that 50mg as well so don't know if fatigue PMR or thyroid. A bit of both I suppose.

Sorry it's a bit of a non answer again for you. But it's hard to disentangle what effects what and how when you have a few auto immune things going on.

I am sure you will feel better once you get hip sorted and you can get more mobile and get the psychological lift from it. It's hard being trapped in your body.

[Estellemac in reply to Hidden]

That's what I was thinking really. It is actually a good answer and I feel better reading it? It's good to share and know I am not the only one with these issues. Today's a better day too mentally. I want a total cure now for everything never been good at waiting. But I'd bet if it all got sorted another life test would pop up. Life isn't an easy ride but I bet mine is much much better than what some other people are having to cope with. Today I am positive and Parker is going to plant the Monkey Puzzle tree in the garden. Weve had it in a pot 10 years. It's time for Spike ( as we call him) to flourish and grow. Thanks for your replies they have helped me a lot I appreciate you taking the time to read and respond. Have a good day. 😊

[tgca]

My doctor suspected overactive thyroid as a result of blood tests and when I saw her yesterday, she went through all notes about GCA etc and said I was a borderline case and to have more bloods done in January unless there were any symptoms. She then asked if I had any more worries/questions!!! She is a wonderful GP and, if it wasn't for her, my husband would not have known he has cancer! Some (very,very,very few) are aok.

[Estellemac in reply to tgca]

Think I was having a poor me day today. But I will have the blood test. I don't have any hypo symptoms other than stopped loosing weight for me op. But that's probably not it just something to blame. I probably came across all wrong.

[Hidden in reply to Estellemac]

I think we are all entitled to days when frustration gets the better of us. It's so hard to keep banging your head against a wall of non-response responses. I think I decided to treat both the Dr and myself as suffering from brain fog at same time. Also sometime letters get copied to me and sometimes they don't. Also on any particular day my brain just won't process the letter. I got worked up.because a nurse had written that I "denied" I had eye pain when I was concerned about headaches and blurred vision. My exact words were "not really" when I saw her.. the word denial made it look like I was being ar $¥. Just made me mad for a bit and I missed but where it said I.should be reducing by 1mg lol.

[Rugger in reply to Hidden]

"Denies eye pain". 'Denial' is a term used in medical speak to mean 'the patient says they don't have' or 'the patient says "Not really" ' and it saves ink / time / space in the notes, but it's not meant in a derogatory way - usually! But we can easily feel belittled by things like that.

[Hidden in reply to Rugger]

perhaps "reports no eye pain" might have eased my discontent at the time lol

[Rugger in reply to Hidden]

Totally agree.

[PMRpro Ambassador in reply to Hidden]

Except that means you initiated the comment - denies means you said no when prompted by a query. Not the same thing - denies means they asked (box ticked) and you said no.

[Rugger]

Hi Estellemac

I don't know how much weight you've lost already, but you may have 'plateaued' because your present energy (from food) intake is just about the right amount to sustain your present 'body mass' - not massive body, I hasten to add! Our energy requirements are related to how much we weigh. Therefore when you were heavier, you could eat and not gain weight, even lose it. Now you are lighter, the same amount of food may be just what you need to stay alive and maintain your weight, but not little enough to keep on losing weight.

When you can increase your activity level a bit, after your operation, you should start to lose again. In the meantime, just carry on in Parker's good hands - we all envy you that! No wonder he's lost weight: chaufeur, shopper, cook and bottle-washer, dietitian, gardener, podiatrist, entertainer, hobby postman Pat - what else have I missed?

[Estellemac in reply to Rugger]

I reckon I have plateaued but want to blame it on Thyroid and really wanted to get a full stone off for the op and show myself I can do it. Probably unrealistic. All I want now is cake Pie chocolate lard and pork scratchings as I know all that food makes you better in minutes!!! Parker has now honed his Gardening skills and planted my Monkey Puzzle tree we have had for 10 years struggles my in a small pot. Spike is happy now to grow tall and deep into the foundations of the house with his roots. But that should take about 20yrs and be the kids problem. Nice legacy for them. 😜😜

[Rugger in reply to Estellemac]

You've done really well to lose weight on pred and with so little activity. Get Parker to give you a (gentle) pat on the back!