THYROID PROBLEMS?

Bones, joints and muscles
1

I wonder if you poor suffers of thyroid problems can answer a query for me please?

Before being diagnosed with either an underactive or overactive thyroid, did anyone have symptoms such as a dry mouth, on and off hoarseness of voice or swollen glands?

I have finally been for my hospital appointment today to investigate my swollen salivary glands. I was most upset as when I received the appointment letter I rang for confirmation of which consultant I would be seeing and was happy when it was confirmed as someone I knew to be highly recommended. However, I did not see an actual consultant at all but aftebeing sent for a dental X-ray was seen by one of his assistants, a very nice young lady but obviously inexperienced and after examining me she went to relay my answers to her questions to the consultant and to ask him whether I should have a C.T scan or an MRI. I told her I didn't want a CT scan with dye because that, I know, can be harmful to my low filtering sole kidney. An MRI is being arranged but she also queried my thyroid and I have now had a blood test for that.

So this has been going on, as you all know, for three months now and I now have to wait another few weeks before the scan and again for a further appointment (the Appointments Desk wouldn't make the appointment before I left today as they said it was fully booked up!) I queried with her as to whether there could be any link with GCA or, as my GP suggested, Sjogren's Syndrome, but felt I may as well not have bothered because she didn't have any answers!

I'm sorry this isn't a PMR subject but I know some of you are thyroid sufferers and I would be very grateful if you can give me any advice, please.

MrsO

2

Mrs O

How frustrating is that?! I do sympathise enormously - you wonder why they send you to see a \"specialist\" when it turns out to be a little boy or girl with less idea than you have yourself!

Again, off the PMR, but a similar experience - when my husband had started his 2nd episode of mania (he has Bipolar), I went to see the local Psychiatrist to report his behaviour etc in an attempt to get them to recognise that he was ill again and start the relevant meds. It turned out to be a newbie in the field and he proceeded to ask me daft questions like, \"is he washing himself? is he spending a lot of money?\" Well, these questions were irrelevant as he never presents like that when he is ill. No matter how much I tried to explain, the Psych kept saying he wasnt ill. This went on for weeks until I realised I could ask for a 2nd opinion and then it gradually sorted itself out. Sorry - that was the short version.

I wonder sometimes if the stress caused by his illness and the ways it has affected me are at the root of my PMR. He has been stable for about 5 years now.

Well, I wonder if you could ask to see someone else next time? Especially if you make the point that your case is complex? Or could you see someone privately to avoid the wait and to see the right person?

Beev

3

I had a similar experience - but it was at least the second time! The first time I saw the consultant who grudgingly allowed me to have steroids as a trial as he was convinced it was some other form of arthritis. I returned 6 weeks later with a diary of post-taking steroids (result in 6 hours and continuing improvement, all came back as soon as I stopped the 5mg dose) and walked in to be met by someone I had never met before. I had to go through the same examinations as 6 weeks earlier plus a few more and then this doctor said \"Oh, I don't know, this is too complex. I'll have to get the boss.\" Who was patronising in the extreme about the results of taking steroids - didn't say anything about the 3 or 4 things he had thought it could possibly be the previous time but had been ruled out by x-rays/tests, just thought up a couple more. It turned out the second chap was not even a rheumy-in-training - that would have been fine by me. So would seeing someone else AFTER I had a diagnosis that fitted. Dr No 2 - was a GP who was interested in rheumatology! Thank you - there was one of those in my practice, wouldn't have taken so long or cost as much (20-odd mile journey to the hospital instead of the one a few hundred yards away where my husband worked). And they wonder why the NHS is struggling - see a patient once and get it right straight away and they don't keep coming back :roll: (or need to come back!). Grrr! And there is the total disinterest in the fact that, whilst you may be ill, you do also have to keep on living a reasonably normal life and - golly gosh - possibly even go out to work?????? :wink:

Better luck next time - though I doubt it somehow. Maybe they have chosen to do the more sensitive thyroid tests. Why couldn't they have given you a form with the questions to write in your own answers in advance - would have been as good as what you went through. :roll: Trouble is, you can no longer be referred to a named person without jumping through hoops - the old experienced GP/favourite consultant relationship has been destroyed and it also put paid to Mrs B seeing the same team every year at follow-up and the consultant looking at what had been found on the patient he'd been seeing for the last 15 years and saying, hang on now - something wrong there! Let's re-invent the wheel every visit and lose sight of the whole person. :doh:

BTW - I had hoarseness and a sore throat almost all the time for the 5 years pre-PMR label. Don't know about swollen glands - didn't think to look but I did go to the GP complaining a few times so I guess he must have checked them. Mind you - when I think of the things that are supposed to be ruled out before concluding it's PMR, I don't think many of those were done either.

Eileen

4

MrsO - Beev - EileenH- Just read your postings. As I have had a poor day, I just broke down and cried. I think we could get some good books on medicine, and become our own doctors. Listen to our body and take care. It is so sad to read how uninterested and callous some of the medics seem to be nowdays. Is it us ? Is it because of the Steroids we have to take, that we feel so untrusting ? Is it because of the day to day struggle to come to terms with PMR, when those around us seem not to completely grasps what is really going on in our bodies and in our minds ? My life, like I am sure, the life of everyone on this forum, was so, so much different to the life we are to be contented now ! That is what makes me so sad. I have a feeling of total loss. I lost the person who was ME, and the one I am now, I have a struggle to accept. Please forgive me this outburst, but if we all have a BIG HUG and be gentle to each other, we will pull through ! :love: :rose: Granny Moss xxx

5

Dear Granny Moss,

so sorry to hear that you are having such a bad day today.

It seems as though this feeling of helplessness and not feeling \"ourselves\" can, at times, be overwhelming.

Not so long ago all I could do was cry, even if I didn't know why !

I think it helps to let it all out, not try to bottle it all up, as so many of us do !

I would go in the shower and have a good blub, and then some more.

I am 'only' 54, I hate to think how this blasted PMR affects anyone older. Trying to soldier on, I have found, is not always the answer. I know that goes against the grain for many people, and I was one of them, but no more.

Listen to your body, and if it needs a rest or a good cry, then so be it.

I do hope that you feel better very soon.

You know that we are all here to 'listen' to you,

Best wishes, Julia ( DD ) xx

6

Mrs O

Im sorry that you had such a frustrating time at the Hospital It is really pointless seeing someone who doesent seem to know any more than you do

Im afraid i dont know anything about Thyroid problems so cant help there My only suggestion would be that if you can ( sorry for being personal ) is to go private as Im sure you would see the top dog then !! I know both LIzzie Ellen and I did with our PMR and the way I deteriorated with my first bout of PMR I would without a doubt have been bedridden if I had waited for 3 months With having only one kidney you obviously need extra care and its a good job you are knowledgeable about it youself

My sister in law who has a rare illness has had the most awful treatment She is under at least 3 different consultants ,very rarely sees who she should and has about 90min journey to Hospital each way and is now on crutches So!!! One of them seemed to forget about a hip op and she gets endless appointments to discuss what is going to happen next !! She has recently seen a lovely man about her knee ( at a Hospital nearer home ) and unfortunatley he has found cancer and will now have to transfer her to an Oncologist but when he heard her story he was shocked and so out of the blue she got a call from the other Hosp to do her hip that week !! So someone was given a kick !! She cant have it now but this nice man has given her an appointment for 6 weeks as he said he wants to make sure everything is being followed up !!!!! So he is a rarity

Sorry you are feeling so low Granny Moss People do get better ( look at Lizzie Ellen ) and I can do so much more than i could twelve months ago so I am sure you will improve also and the summer months are always better for us PMR sufferers I hope you sleep well tonight

Best wishes

Mrs G

7

Hi all,

Granny Moss...so sorry you are feeling down today :cry: .

I felt awful earlier due to my stupid encounter with the pancakes, but I'm much better now 8).

I think we all sometimes forget, because EVERYONE ELSE does :wink: , that we have a long term illness sad and that we are not always able to do the things we would like to be able to do :? .

Our cat had a bit of a lump on her leg today and the family were all fussing over her.....I'm covered in bruises & can barely move....does anyone even notice :?: :shock:

Hope you get a decent nights sleep tonight and feel better and more refreshed in the morning :wink:

Mrs O ....I am soooo lucky that I have a very attentive GP who regularly phones me just to check that I am OK....could be dead and buried before the rheumy would enquire ....and onlty then because he was missing his fat fees !!!

Doctor's.....don't you just love them :roll:

Sleep well everyone :wink:

Love, Pauline.

8

Beev

After reading what you went through with the psychiatrist whilst coping with your husband's illness, I wouldn't be at all surprised if that was the trigger for your PMR. Some sufferers have said that they lost a loved one before succumbing and others have referred to different stressful situations. Other triggers often seem to be of viral origin or as a result of statins, plus, of course, environmental. Thank goodness though he's been well whilst you've been struggling with PMR.

Have a lovely weekend - you're certainly starting it off well with pancakes and French cider! :redwine: :wink:

MrsO

9

Mrs G - yes, I did think about a private consultation today but as an MRI is now being arranged I may as well wait for that (I gather that alone would be about £500 privately!). Then if the next appointment doesn't come through in the expected 3 weeks, I will have a re-think.

Luckily, my Tai Chi class was on today so I was able to unwind after the frustrating couple of hours at the hospital this morning! At the moment I must try and put things in perspective - others like your poor sister-in-law are in much worse situations.

MrsO

10

Eileen

\"See a patient once and get it right straightaway and they don't keep coming back\"- my thoughts entirely as I was leaving the hospital today....they needn't have wasted the money on the dental X-ray but could have gone straight to the MRI. More dental X-rays tomorrow at the new Dentist I expect! :roll:

Pauline

It was so heartening to read your comments about your GP and Lizzie Ellen relating to her lovely rheumatologist - there are some good ones out there after all! :D

Granny Moss

I really do hope you're having sweet dreams tonight so that you'll feel brighter and happier tomorrow. :zzz:

MrsO

11

Mrs O

Glad you had your Tai Chi to help - you know how envious of you having a convenient local class I am!

Maybe a silly question; my GP has done at least 3 thyroid tests especially when I was complaining of tiredness, though I certainly dind't have your oral symptoms - has yours done that?

Have a good day everyone, Green granny

12

Good morning Green Granny (not so good weather-wise though is it :roll:

Not a silly question at all (being so complex, I don't feel any questions are silly as far as PMR/GCA and possible linked conditions are concerned!). I may have had a thyroid check a few years ago but as far as I know one wasn't carried out during my current problems. Off to the dentist this morning so could do with another Tai Chi class today! :wink:

Take care Green Granny and everyone else looking in.

MrsO

13

Hi Mrs O and everyone,

I have had no internet access for 9 days now. Very frustrating when you can't do anything much except sit in a chair!

I got thyroid failure about 25 years ago. I had aches and pains, felt very cold, became slow at doing anything and very tired and had a swollen face and eyes. I don't remember having a sore throat but you can get a gruff voice with it too.

'Within normal limits' is a wide band for thyroid level T4 and I don't feel comfortable at the upper end of this. I get palpitations and shaking. I finally agreed with my doctor that I should be on a dose of 125mcg instead of 150mcg and stayed this way quite happily for 20 years until PMR came along.

My thyroid seems to have sprung back to life in response to PMR and my T4 level went well over normal although I had no symptoms of overactive thyroid. As I have been told to reduce my thyroxine intake and it is now 'within normal limits' again, on alternate days 50mgc/75mgc.

Now I have exhaustion, aches and pains, palpitations and shaking and a thing that feels like an electric shock under my left arm and across the left side of my back and chest about 20-30 times a day randomly. If I get up for more than a few minutes I feel worse and have to sit with my eyes closed for a few hours.

I have seen the rheumy and cardiologist and am waiting for more tests and an appointment with the endocrinologist next week. I find its best to have very low expectations of any appointments to avoid the disappointment of seeming to make no progress!

It used to take two weeks to get any results from a thyroid test but they do them much quicker now, in a couple of days. Other symptoms are constipation for underactive thyroid or 'the runs' for overactive (can't spell the right word).

However, I have given up trying to work and do everything as I can't anymore. I have a warm, comfortable house, food, a helpful family, good friends, phone, TV, internet again with great people who understand and I may even get better some day. In the meantime the cat sees it as his mission in life to keep my lap warm and me sitting down so much has made him very happy!

Sleep well,

CathyG

14

Hello Cathy

I am so sorry to hear how poorly you are feeling When my internet all failed I went scurrying off to my local library to get my fix !!

I havent any knowledge of thyroid problems so cant offer any help there It is very difficult when you have more than one illness and the medications collide in the middle and i am sure it is difficult for the Drs too

I can remember my sister in law having Thryrotoxocis ( I think !) when she was 15 and she was in hospital and she started on 32 tablets a day !! which gradually reduced until she was 21 and off them She was absolutely fine then until she had her 2nd baby when she was 30ish and it all went crazy again and she was so thin !!! She has large brown eyes and it was all you could see in her face She is now in her early 50s and whether she will have problems again when she goes through the menopause I dont know

Im glad you are being supported particuarly by your cat !! Find a nice sunny spot to sit indoors as it is lovely today

Best wishes and hope your problems are sorted soon

Mrs G

15

Mrs O,

Sorry I didn't see your post until now; I spend most of my time at the other site! Your problem is probably resolved by now, but anyway:

I have a slight thyroid problem--hypothyroid--I take the lowest possible pill strength of Levothyroxine , .025mg once per day.

If it weren't for the blood test, I never would have known my thyroid was \"off\" .

Most nights I will wake up with a dry mouth but I don't know if it's because my bed is next to the heater which could be blowing warm air in my direction and drying my mouth; or I eat too much salty food too close to bedtime. I'm just not sure. I need to tell my doctor because she had asked me if my eyes felt dry and I had a dry mouth. I'm not sure about my eyes. I wonder if she was thinking of Sjogren's Syndrome.

Anyway, best to you and hope you are doing better.

freesia

16

Freesia - a very quick thank you for your experience re thyroid problems which have taken a back seat with me for the moment! Called by London Ambulance Service at 8.15 am on Saturday saying that they felt sure my son who had returned from a long haul business trip to the States the previous day) had severe Labrythitis and couldn't be left (hubbie had left for France at 5.15am for the day with school...how did he manage that?!!) so since then I've been doing the day shift and hubbie the night shift. But after a w/end of doctors' 'phone calls and visits and change of medication and injection he seemed to be on the way to recovery yesterday. Re the swollen glands, etc, had an MRI yesterday eventually!!! They had arranged it at the wrong hospital and I froze waiting half an hour for the mobile unit to open only to ring the main hospital and be told the mobile unit didn't operate today and that I should be at the main hospital!!! They told me to get there \"as soon as I could\"!!!!! When I did get there and asked for an explanation they said it was a mix-up in appointments at which point I told them how angry I was and how stressed I now felt following my w/end worries with my son.....and promptly burst into tears! She sympathised and said \"that was the icing on the cake\", I replied \"no, it was the last straw\"! I feel I'm jinxed at the moment. So just off to my son again (he's 38 but I guess once you have children you worry about them whatever age they are). I'll write again re the thyroid versus Sjogren's once I have my results next week (at the right hospital I hope!). You take care and perhaps have a word with your Dr about your dry mouth - I have discovered that there is a blood test for Sjogren's but it may only show positive in about 50%.

MrsO

17

Oh dear Mrs O. How worrying for you, it doesn't matter how young or old your children are, they're just that - your children. My daughter was 37 when she so ill, fighting for her life in the ICU - 7 or 37, it didn't make any difference. Hope your son is well on the way to recovery. As you say the mix up with the MRI scan was the 'last straw' - you handle the big things and fall apart at the smaller ones. At least that's what I do! I do hope everything works out OK.

Best wishes from Lizzie

18

Dear Mrs O,

so sorry to hear about your son, no, age makes no difference, they are always your children aren't they ?

Sorry 'the last straw' came into play.

What is the matter with some people ? You'd think making an appointment would be easy enough !

Hope the results don't take too long and that all is OK.

Best to all, Julia xx

19

Mrs.O My mum until she died still referred to the three of us as \"the girls\". We were, by then, in our late fifties to mid sixties!

You are obviously another coper. Do hope all is now going well for your son.

As for the hospital mix up...words fail me luckily as I'm sure I'd be moderated off the forum if I really expressed myself on the subject.

20

Mrs O !!

Thank you for your good wishes and what a time you have had

I hope all your problems are now over You seem to have had more problems recently than all of us put together !! It is so awful about your appointments as well !! I really hope your son is better soon and all the stress doesent make you worse !!

Thank you all for your best wishes Off out again tonight !!

Mrs G