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Long time away

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Long time away

Post by Amanda Lynne on Tue May 19, 2015 9:13 am

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Hi All
I'm afraid I have been away from the forum for quite a while, I've been feeling really quite unwell and not able to contribute. I'm sorry I've missed all your happenings and it will take me a while to catch up. I do know Nancy has had her op, well done Nancy hope you are recovering now, sending you much love.
I hope any other members who have had their ops while I've been absent are all doing fine and enjoying their newly found health.
I'm still in limbo land rheumy is desperate to put me on autoimmune treatment but as none of my blood tests have shown anything remotely inflammatory, every test done 3 x and nothing, whereas when I had vasculitis 19 years ago it was showing up on every test done and then cleared completely. I'm reluctant to agree at this stage.
I myself am querying possible Thyroid, my Endo  so let me give you guys my symptoms and see If it rings any bells, sorry it's quite a long list.
Extreme tiredness
Aching joints- hips, knees, feet, hands, neck, lower back
Stiff muscles
Sore eyes
Dry skin
Blotchy/reddish skin
Sore edge of heels so painful I can't rest on it at night
Burning feet.
Feel like death in morning
Palpitations 
Brain fog
Thinning eyebrows
Flakey nails
Headaches
On off blurry vision
Feel cold most of the time
I'm sorry it's not parathyroid related but since that operation I've actually got worse not better and as they have ruled out pth causing these symptoms I'm struggling with a diagnosis. Everyone is adamant FHH is not the problem.
I have had one low T4 test but was told as it didn't show again that this was just a one off.
Thanks in advance for any help, I'm at my wits end.
Love Amanda xxxx


Last edited by Amanda Lynne on Tue May 19, 2015 9:14 am; edited 1 time in total (Reason for editing : forgot something x)
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Re: Long time away

Post by Amanda Lynne on Mon May 25, 2015 8:17 am

Hi Nelly 
I have used the magnesium spray and I'm not sure if it's worked but the cramps have eased off, my calf just feels very bruised now but I can cope with that. I'm getting increasing dizzy spells and ringing/tinnitus, these have been there for about 6 months. Maybe I'm just noticing them more. I do hope I don't sound like a hypercondriac.
Love A xxxx
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Re: Long time away

Post by Hadleigh on Mon May 25, 2015 9:24 am

Oh dear it does sound like you need this sorting out soon. Might you be a bit dehydrated as lack of salt can cause cramping but hopefully you are over it now.

Dizzy should be my middle name, I get squiffy head on a daily basis, I was hoping it would go when the hpth thing was sorted but alas it is still with me so I'm assuming it is thyroid. A lot of people get brain/head symptoms, spaced out, disequilibrium, balance probs, the list goes on.

Sadly as the list of symptoms is so long doctors do think of us as hypochondriacs but we know we are not, if only they could walk in our shoes for a while Neutral

Its a bit of a dreary day here, hopefully the sun will come out in time for the daily dog walk, they got a bit soggy yesterday in the drizzle.

Enjoy your day

Nelly
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Re: Long time away

Post by Amanda Lynne on Mon May 25, 2015 10:40 am

Thanks Nelly
I try not to get dehydrated but I'll up my intake just in case. Dizziness is very unpleasant so I really sympathise. Is there nothing they can do about yours if it is Thyroid ? 
Yes I have a feeling GP will probably switch off half way through me discussing this and suggest I wait to see Rheumy (and his steroid injection theory !) or Endo in July.
The sun is on and off here but won't be going far as Other half has a kidney/urine infection : ( so I'm playing nursey. Shame it doesn't work the other way around ; )
Oh no soggy doggy, bet that was fun getting them dried off x.
Thanks again for your support.
Amanda xxxx
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Re: Long time away

Post by Amanda Lynne on Wed May 27, 2015 6:49 pm

I went to see GP I shouldn't have bothered, he basically said blood tests in range apart from one but he said that wasn't really low. He said "you have been very dogged with your research but sometimes you have to accept there isn't an answer to your symptoms and you just have to accept feeling slightly off colour" !!!!! 
At this point I broke down and said can you explain the eye problems ? Can you explain the dizziness ? The pains in feet etc etc he said no but I'm sure the Endo would have picked up on it if there were problems, you will have to discuss it with her.
I gave up then and just said, if you can give me some blood forms for thyroid I will go.
I'm so annoyed frustrated and angry.
A xxxx
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Re: Long time away

Post by Hadleigh on Wed May 27, 2015 8:14 pm

Oh dear what an idiot doctor, they don't know enough about thyroid to be able to diagnose it, as long as the numbers are within the bl***y brackets then its no problem. Pre hpth diagnosis my GP's remark about the many symptoms I had was " well you are old, at your age what do you expect" Shocked think I was 58 at that time Rolling Eyes. You shouldn't have to "accept feeling off colour", he wouldn't be so dismissive if he or a family member were living with the symptoms day in day out.

We both understand the horrible situation you are in Amanda, it is just so wrong. Can you change GP and/or Endo, you may get lucky with one who will at least try you on some thyroxine to see if it helps.

You could post on thyroid uk forum to see if there are any nice helpful endos in your area.

Hope you can sort something out.

Nelly xx
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Re: Long time away

Post by Admin on Wed May 27, 2015 8:24 pm

So sad Amanda.

I suggest trying a different GP and prepare yourself having read http://www.thyroiduk.org.uk/tuk/diagnosis/getting_diagnosis.html

Edwin
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Re: Long time away

Post by Amanda Lynne on Wed May 27, 2015 8:37 pm

Thank you both, I'm seeing Endo in July I've got 2 lots of bloods to get done before that so I'm praying (and I'm not religious at all !!!) that something dramatic shows up. If not I'm going to try to find an Endo or GP who actually understands.
Thank you again.
A xxxx
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Re: Long time away

Post by Hadleigh on Wed May 27, 2015 10:24 pm

I can't remember if we said but thyroid bloods need to be done early morning when TSH is at its highest which is what you want.

Nelly
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Re: Long time away

Post by Amanda Lynne on Thu May 28, 2015 7:07 am

Thanks Nelly
I'm going to try to get them done early this morning but I'm having to wait until Steve is around as I've got awful leg cramps that I've had all night and can't drive. I'm shattered.
A xxxx
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Re: Long time away

Post by pilipala on Thu May 28, 2015 7:46 am

Hi Amanda,

I've been keeping up with the forum but seemingly never getting round to post. I just can't believe how many of our apparently 'excellent' doctors have no critical thinking skills at all. If they've bad at parathyroid stuff they seem to be ten times worse when it comes to thyroid.

So sorry you're having to deal with double muppetry from both GP and your endo (who sounds utterly useless). I'll pray too that you find a better clinician who actually listens to your symptoms and treats accordingly.

Thanks goodness for Dr Nelly and Dr Edwin - Hope your own health is improving Edwin.

Big hugs,

Dee
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Re: Long time away

Post by Amanda Lynne on Thu May 28, 2015 8:09 am

Thank you Dee
I'm really struggling with this having no support from either of the medical team and just being made to feel as though I'm wanting to be ill and making it all up. I'm hoping something obvious (as if all the symptoms and iffy bloods aren't enough) shows up soon. I can't even walk properly today can't put my foot flat down due to cramps that go from calf up to hip, I've tried everything to ease it off.
Love A xxxx
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Re: Long time away

Post by Amanda Lynne on Thu May 28, 2015 8:12 am

Any idea how long thyroid bloods take to come back. Most of our tests are back within a day or two.
Thanks Amanda xxxx
Yes thank goodness for Nelly & Edwin X
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Re: Long time away

Post by Londanna on Thu May 28, 2015 8:20 am

Hi Amanda

Its been very quiet on here lately and I haven't been around much, but I am so sorry to hear that you are feeling so rotten.  Your GP sounds awful and clearly isn't interested in her patients.

Do you think it would be worthwhile asking to see Dr Canham again?   I know she is in genetics but I also know she works very closely with the team at Hammersmith and St Mary's in Paddington where I go.   St Mary's (and probably at Hammersmith too) have a very experienced Thyroid team under the leadership of Pof. Stephen Robinson (who is fantastic and very kind) and I am sure she would be willing to refer you on if she felt your symptoms suggested further investigation.   Alternatively, Prof Robinson has a private clinic at the hospital.

As far as the cramp is concerned my lovely GP (she was the one who recommended I ditch the local Endo for a second opinion at St Mary's) told me to take quinine.   As this is an ingredient still of Indian Tonic Water it was easy (and it sounds like you could do with more than one G&T) to take a glass in the evening before bed and widely available in supermarkets.   It worked so well.  It certainly wont do you any harm.   All I can say is that it stopped my cramp overnight.

Best wishes to everyone on the site. Hope this post finds you all in good or imroving health.

Londanna

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Re: Long time away

Post by Hadleigh on Thu May 28, 2015 8:46 am

Amanda,  thyroid bloods can be done next day but usually its a few days, antibodies test can take a bit longer. 

Nice to see you back Dee and Londana, hope you are both doing ok, it has been very quiet on here lately, we were beginning to feel lonely Neutral

Nelly
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Re: Long time away

Post by Amanda Lynne on Thu May 28, 2015 10:51 am

Hi Londada
I'm going to wait to see if these blood tests come back with anything and if they do show positive I'm trusting that even my DR's should be able to diagnose me. I have Endo in July (I've written to her in mean time giving her all the blood tests, comments from eye consultant and new list of symptoms) if I don't get any joy I will then ask to be referred for a second opinion. 
Thank you for all your help and suggestions and I will definitely have a look at Prof Robinson. Also I will try the tonic water, I'll do anything to get rid of this cramp it's making me feel really c**p.
How are you ?
Love A xxxx
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Re: Long time away

Post by Admin on Thu May 28, 2015 2:12 pm

Hi Amanda

Whoever you see, you need to get them focussed on the obvious hypothyroid symptoms as the priority and not whether the blood levels are within a range that has no bearing on real-life experiences.

To an experienced thyoid person, your blood results simply confirm the diagnosis from the symptoms. 

The minimum that you should aim for is a trial of Levothyroxine.

Edwin
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Re: Long time away

Post by Amanda Lynne on Thu May 28, 2015 2:36 pm

I agree Edwin and that's what I'm aiming for. I'm feeling really rough today, I can't put my heel down at all on left foot because it hurts under heel arch and my calf muscle is pulled tight and really sore so I'm having to limp. I'm also feeling really light headed and have to keep sitting down.
I can't believe how GP just thinks this is acceptable. His answer was they are non specific symptoms and could be due to lots of things or nothing but when I asked him why have I got sore eyes he said I don't know ! The list of symptoms I gave him was the one on Thyroid UK 2 pages and he didn't look at it just pushed it back at me. This GP owns the practice so seeing another one there won't work easily.
If it carries on like this I will end up in A &E and I really don't want that. I think I'm going to have to take Steve in with me even if it's just to put them straight that I'm not imagining it all. 
I've just got to fight for this I can't keep seeing consultants and not getting anywhere with them because they can't diagnose me and then fobbing me off with another 5 mth wait to see them again. It seems to be getting worse quite rapidly at the moment.
A xxxx
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Re: Long time away

Post by Admin on Thu May 28, 2015 7:17 pm

Good plan to take Steve with you.

Also, I recommend that you focus on the main (most common) hypothyroid symptoms only, as mentioning too many symptoms may work against you.

Edwin
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Re: Long time away

Post by Amanda Lynne on Thu May 28, 2015 7:54 pm

Thanks Edwin 
I think you are right I just have to work out which ones they are out of all the ones I have.
A xxxx
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Re: Long time away

Post by Admin on Thu May 28, 2015 9:05 pm

Dry skin, feeling cold inside/shivering, afternoon crash (sudden deep tiredness around 2 -3 pm), lack of energy, hair loss.
Although anxiety, depression and weight gain are also common symptoms, they open the door to incorrect diagnosis, so best not mentioned.

Edwin
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Re: Long time away

Post by Amanda Lynne on Thu May 28, 2015 10:14 pm

Thanks Edwin
Yes I have avoided mentioning any feelings of anxiety etc as I know it would be misinterpreted and all I would get is offered anti depressives and that isn't what I need. I do have all those main symptoms and I will concerntrate on them.
I'm hoping my leg and heel improve soon otherwise I'm going to have to go back to GP and I don't want to do that but having to limp until I see the Endo in July isn't going to be easy. I see Rheumy next Friday but he is obsessed with steroids so I can't see he will be much help.
I'm just waiting on some good news from blood results.
A xxxx
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Re: Long time away

Post by Amanda Lynne on Fri May 29, 2015 7:12 am

Has anyone heard of testing basal body temperature first thing in the morning before moving and under your arm ?
I've done the first morning out of 3.
Today's result is 35.1 apparently a constant low temp is an indication of hypothyroid.
I presume they are using 37.8 as normal, am I right ?
Thanks Amanda xxxx
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Re: Long time away

Post by Hadleigh on Fri May 29, 2015 9:10 am

Yes a lot of people do that and doctors should take notice, however you need to know what your normal temp was pre symptoms. If you are running lower than you normally would have done its another tick in the box.

Your heel pain could be planter fasciitis, another hypo symptom, cant remember if I said this already, I have a serious case of fuddled brain at the mo Rolling Eyes

Nelly
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Re: Long time away

Post by Amanda Lynne on Fri May 29, 2015 9:27 am

Hi Nelly I'm so sorry you are having those horrible brain problems, hope you feel better soon.
Yes I was thinking that about heel/calf pain. It's under heel up the back to the Achilles and I'm permanently on tip toes on the left side to ease the pain.
From what I remember my normal body temp is around 36.8 give or take a bit. I only remember this from playing with the thermometer with my Daughter when she was tiny to get her used to using one. Mind you she is now 21 so I'm not sure that's much to go on.
Hope the brain fog clears for you.
Love A xxxx
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Re: Long time away

Post by Amanda Lynne on Fri May 29, 2015 2:24 pm

Hi Nelly & Edwin 
I've found some very old Thyroid tests I have had done, don't know if they mean anything. The range for TSH is 0.34-5.6 FT4 7.5-21.1

5/6/07   TSH 1.62 FT4 9.0
7/6/07   TSH 1.56 FT4 9.0
23/8/08 TSH 2.34 FT4 10.00
3/4/09   TSH 2.38 FT4 9.60
25/5/12 TSH 2.82 FT4 8.50
23/3/13 TSH 1.68 FT4 8.40

Thanks for any insight into these.
A xxxx
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