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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 Hadleigh on Wed Jul 22, 2015 12:28 pm

Calcium is a tad on the high side so best keep a close eye on that, did you have pth done ?
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Re: Long time away

Post by Amanda Lynne on Wed Jul 22, 2015 1:29 pm

Unfortunately with FHH I'm always going to be high calcium wise, this is the lowest it's been in ages last time it was 2.65. I think pth was done I should have all blood results back soonish so I will let you know.
Xxxx
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Re: Long time away

Post by Hadleigh on Wed Jul 22, 2015 1:35 pm

Ok yes I should have realised that, temporary brain fog Rolling Eyes
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Re: Long time away

Post by Tigerlily on Sun Jul 26, 2015 12:56 pm

So good to see you back, Amanda. I can't help with anything at the moment, but great to see you here again!

Love from Tigerlily xxxx

PS Update on my situation soonest.

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Re: Long time away

Post by Amanda Lynne on Mon Jul 27, 2015 4:11 pm

Hi Tigerlily
Look forward to hearing how you are.
Nelly & Edwin 
As promised blood results from Endo
Calcium 2.65 corrected 2.57
PTH 4.7
Vit d 66
TSH 2.92
FT4 11.3
FT3 4.00 
Thyroid peroxidase Ab <33
There is a low reading on the liver function test of GGT 11 range 12-43
I had no idea what that was and on looking it up it says could be low magnesium or indication of hypothyroid !!!!!! 
She repeats that in her opinion there isn't any endocrine cause for her symptoms and has suggested I ask the GP for a trial of HRT I'm not quite sure what to make of this.
Amanda xxxx
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Re: Long time away

Post by Amanda Lynne on Mon Jul 27, 2015 10:50 pm

Hi Nelly how did it go on Friday ? I hope Edwin is ok and it didn't cause any problems.
Love Amanda xxxx
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Re: Long time away

Post by Admin on Tue Jul 28, 2015 10:17 pm

Hi Amanda

The Op went OK - transposing the fistula vein to the top of my right arm for future access when I need dialysis.

However, as we my two previous ops this year, I lost blood and now the wound is leaking (again).
It's expected to leak for a cuple of days, but I suspect that another trip to Exeter is coming soon.

They gave me 2 units of blood this time, so I am better prepared, but I don't like losing it and don't want my Hb to drop so low again.

cheers
Edwin x
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Re: Long time away

Post by Admin on Tue Jul 28, 2015 10:33 pm

I can't believe that you have not been prescribed Levothyroxine, as it is blindingly obvious from your symptoms and blood results that you are hypothyroid.

As much as I dislike the reliance of TSH as an indicator for treatment, it is useful for an initial diagnosis - anything about 1 to 1.5 is a sstrong indicator.  Your FT3 and FT4 are at the low end of their reference ranges, which reinforces the diagnosis.  They should normally be in the upper half of their respective reference ranges.

Your Endo is clearly not a Thyroid specialist and is blindingly following the guidelines, which any decent Thyroid endo will know are totally inadequate and not fit-for-purpose.

I don't know what to say that will help, apart from finding yourself a new GP who will let you try Levothyroxine.
This really should be something that GPs can deal with, as it is not rocket science.

You should only need an Endo once you have tried Levothyroxine and found that it is not working.

I suggest that you try to get a trial of Levo from your GP.
You normally start with 25mcg for a couple of weeks and increase to 50mcg.
Have a blood test at around 6 to 8 weeks and adjust the dose (you'll probably end-up on 75mcg - 125mcg) if needed to get your TSH below 1 and FT3/FT4 in the upper half of their ranges.
You should begin to feel the effects of Levo after a couple of week and full effect by week 6.
Levothyroxine does not owork for everyone and some people are allergic to the binders/fillers, but there are alternatives (more expensive and more difficult to obtain).
Food, drink and some drugs interere with the absorbption of Levo, so take with water only and at least 1 hour away from food, drink and other meds.
Levo is normly prescribed to take in the morning, but sme people (me included) take it at night to keep clear of food, etc.)

I do not know if any of this helps, but I wish you good luck and please do not give-up trying to get the correct diagnosis.

Edwin
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Re: Long time away

Post by Amanda Lynne on Wed Jul 29, 2015 9:10 am

Hi Edwin thank you so much for your help, especially as you are going through rubbish stuff yourself. The op sounds horrible and I hope the wound stops leaking soon. With the extra blood they gave you i hope your HB stays at a decent level and you don't have to go back to Exeter x.
I'd all but given up hope of getting a hypo diagnosis after receiving her letter but you have spurred me on to keep trying, especially after looking up what this GGT low level means as well. It apparently indicates low level of Magnesium which I haven't got it always in upper levels of range, in fact at one point it was borderline high ! Or an indication of hypothyroid. I know it's just a one off blood test but it's not the only one that has been out of range and as you say my levels aren't in the range for a healthy functioning thyroid plus I have classic symptoms.
When I questioned weight gain ( I'm not overweight by any standards but I'm still gaining weight for absolutely no reason) she said "get yourself a running machine, they work wonders" I did remind her that this suggestion was immediately after I'd discussed the fact that my feet are agony, I can't be on them for very long and they swell up !!!!!
What also amazes me is that she said in her letter, " I know your symptoms pre date you stopping your periods in November but do you want to ask your GP for a trial of HRT" !!!!! 
I think she just wants to get rid of me. I'm seeing a different GP at my practice who is usually quite difficult next week but who knows she may have I different view re the whole thyroid thing.
Thanks again Edwin I will keep fighting this and if I can find a private thyroid specialising Endo I'll be knocking on their door.
Love Amanda xxxx keep as well as poss x
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Re: Long time away

Post by Admin on Fri Jul 31, 2015 8:43 pm

Just back from another two nights in Exeter Hospital to fix the bleeding wound.
Hopefully, we will not have to go there again for any more unscheduled visit for a while.

I now have a lovely fistula, which I am hoping to avoid using as long as possible.

Keep fighting the system for your hypothyroidism diagnosis.

Edwin
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Re: Long time away

Post by Amanda Lynne on Fri Jul 31, 2015 10:25 pm

Glad to hear you have had the wound repaired and I hope you do not need to use the fistula for a very long time.
Amanda xxxx
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Re: Long time away

Post by Little Audrey on Mon Aug 03, 2015 1:46 pm

My goodness, I just posted that I hoped everybody was doing well, and then I read these posts!   Obviously, you're not all doing well!!!   I sure have missed a lot here!   

Amanda, I'm sorry you're still struggling so badly.   That darned thyroid can cause so much trouble!    Actually, all of these endocrine issues are real buggers!   I do hope you can get some help soon so you can feel better.

And Edwin, my goodness, you've been through the mill as well!    That fistula sounds awful!  You poor thing.  I actually never heard of that until you posted this.  It's very interesting but sounds awful!     Many times I feel sorry for myself until I read what others are dealing with.  I feel very fortunate now.     I am so sorry you are all going through so much.   I will continue praying for everyone.

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Re: Long time away

Post by Amanda Lynne on Thu Aug 13, 2015 2:43 pm

Hi All
Thank you Audrey for your kind thoughts.
Just a little update. 
Saw Gastro yesterday, not my normal one who I get on ok with this man I could hardly understand, very strong Eastern European accent, struggling to explain himself couldn't find the right words to say !!! Upshot was all clear, nothing at all re auto immune which could explain other symptoms, he asked if I wanted capsule endoscopy done and when I asked did he think it was necessary he said no, so I said I didn't want it. I have now been discharged from Gastro until I feel I need to see them. Good news.
I have been feeling b****y awful recently. I have horrible tingling in both arms, my feet and calf have been painful and stiff. In mornings and if I've been sitting down. Feet constantly hurt. I've been feeling exhausted even standing drying my hair for 20 mins I have to keep sitting down. Today I've got neck pain and headache and my right hand is so stiff I can hardly straighten my fingers. Also horrible tinnitus.
Next week I have GP on Wed, Physio on Thurs (arranged by rheumy to see if back pain is cause of foot pain !) Rheumy on Friday. I'm just hoping I get some answers.
Love Amanda xxxx
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Re: Long time away

Post by Lucycatnaps on Thu Aug 13, 2015 6:00 pm

Hi Amanda,
I am glad that everything gastro wise is looking good  and that he has given you the all clear, it is such a shame though when english is often not their main language and I can relate how hard it can be to comprehend all that they are saying.  I am really sorry you are feeling so rotten at the mo, all I could picture is Eeyore with his little black rain cloud hanging over his head.....  Or rather that is how I often feel as well.....  I am convinced you have a thyroid problem, so many things you say resonate on how I felt when I became hypo, although I too am having leg pain above my ankles and worse first thing in the morning and definitely very stiff hands.  Is there any chance when you see your GP next week of persuading him to let you trial Thyroxine to see if any symptoms improve? I am convinced though that this FHH causes many more symptoms that doctors just sweep under the carpet and label asymptomatic.  I had a few sessions in the sun last week for half hours and each morning after I felt worse. It seems to be a couple of better days then downhill again and it is constantly like this.  I really do hope you can find some answers as I know I'm struggling too.
Big gentle hugs, Sue xxx
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Re: Long time away

Post by pilipala on Thu Aug 13, 2015 6:13 pm

Sorry to hear that you're both going through the mill. I want a magic wand so I can wave it and stop these stupid symptoms, failing that I wish you intelligent and caring doctors to get to the bottom of the root cause.

I relate to the tinnitus and the feeling worse after spending time in the sun. After two years of getting loads of sun, I'm being more cautious and I definitely feel better for it even if it's not good for my bone density in the long run.

Until, I acquire my magical powers I'll send you great big hugs instead.

Love
Dee
xxxxx

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Re: Long time away

Post by Amanda Lynne on Thu Aug 13, 2015 7:47 pm

Hi Sue & Dee
Sue I do feel like Eeyore quite a bit at the moment so I do know how you feel. I'm going to try with the GP next week but m not holding my breath since the horrible Endo has said she deffo doesn't think it's endocrinological !!! She will have contacted GP with this info. I have been in the sun on and off and I'm not sure if this make me feel worse as I just feel crap all the time and this evening I've developed a stabbing pain above my left ear which is really painful. I'm going to take some syndol to see if they help but they are pretty strong.
Dee thanks for the hugs they are greatly received.
Love Amanda xxxx
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Re: Long time away

Post by Amanda Lynne on Sun Aug 23, 2015 7:46 am

Hi All how is everyone ?
Just a quick update, I know it's no longer path related but here goes anyway.
Gastro all clear had double endoscopy, CT and barium follow through. All clear for inflammatory disease which is very good news.
Endo is convinced that it's nothing endocrine, I'm not so sure. She says ask GP for HRT !!! this is despite no hormone tests being done by her and no obvious menopause symptoms (hot flushes or night sweats) also I've not stopped periods yet.
GP has given me all hormone bloods to be done plus re test TSH FT3 & 4 so let's see what comes back.
Physio (I was referred by Rheumy re back and plantar fasciitis) only had one appt which was assessment he thinks I've got inflamed hamstrings which could explain groin/hip pain and may also be related to back and foot pain. He didn't know why they would be inflamed. I'm getting severe pain in hip and groin after walking very short distances and loose strength suddenly. If I keep walking it eases off a bit. 
Saw Rheumy Friday he says no obvious inflammatory disease he's 98% sure it's not that but says if nothing comes of blood results he thinks a trial of steroid injection very low dose, to see if there's any improvement.
I said I had asked Endo for trial of levo but she refused, I asked him if he thought that was reasonable he said yes if my results are borderline but it's not his area and wouldn't want to be quoted on that.
Hope you are all as good as could possibly be expected. I would love to hear how you all are.
Love Amanda xxxx
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Re: Long time away

Post by Hadleigh on Sun Aug 23, 2015 9:30 am

Hi Amanda

Well it is good all Gastro tests were negative but sounds as if you have hit a brick wall with the other docs, except the Rheumy one who accepts that you need to try Levo. Terrible situation you are in but all to common as seen on the thyroid forum. Hopefully your next tests will convince your GP to give you a trial.

Do let us know how you get on.

Love
Nelly
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Re: Long time away

Post by Amanda Lynne on Sun Aug 23, 2015 11:05 am

Thanks Nelly
How are you and Edwin 
Amanda xxxx
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Re: Long time away

Post by Hadleigh on Sun Aug 23, 2015 11:41 am

We are plodding on thanks Amanda, I'm still waiting for my 3rd Litho appt for the kidney stone but its not expected to work so waste of time really, next step will be surgery of some sort
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Re: Long time away

Post by Amanda Lynne on Sun Aug 23, 2015 12:42 pm

Oh no Nelly I hope by some miracle it does work. Is the surgery, if you need it, a very big operation ?
Xxx
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Re: Long time away

Post by Hadleigh on Sun Aug 23, 2015 2:59 pm

There are a few options but I would opt for keyhole if given the choice, involves lasers and stents so wouldn't be much fun, so annoying the Litho hasnt worked, typical I had to be in the minority who fail
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Re: Long time away

Post by Amanda Lynne on Sun Aug 23, 2015 6:34 pm

Very unfair, hope if you do have to have it done they get it sorted and you don't have any more of them.
A xxxx
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Re: Long time away

Post by Lucycatnaps on Sun Aug 23, 2015 8:04 pm

Ohhh Amanda,
It really is no joke and so frustrating trying to find answers, I really do sympathise and I know how awful the hip pain can be.  Can I ask, when you say it loses strength suddenly, do you mean several steps are fine and then it just gives way suddenly with a sharp spike of pain and then is fine again?  Before I had my hip replacement, I could walk less and less, kept getting bursitis, saw rheumy who advised a steroid injection but I did not have it done as I went on my own to the appt and he said I would need to be escorted home after.  I saw ortho's a few weeks later and he advised never to have steroid injection to hip as effects are shortlived and it speeds up the degeneration.  About 6 months later I saw yet another ortho who said because I could lift my knee to my chin, my hip did not need doing, even though I was limping badly.  I tried to hang on as I was only mid fifties then but I too had lots of burning groin pain and seizing up.  I was fine pottering around the house but then it started to really get bad especailly at night and really aching.  All this was before I knew my calcium was high and I had been told it was osteo arthritis, yet my left hip is absolutely normal for my age with normal wear.  Anyway I went back to GP in Feb 13 and asked to be referred to a private hosp that had excellent reviews as all they do is hips and knees etc for the NHS.  It was very much a conveyor belt system but I had it done in May 13, much quicker than our local hosp in Boston.  I had to take iron pre op as I was very anaemic but they did tell me my leg was an inch longer than my left and that was tilting my pelvis csusing my back problems that had started.  I do wonder now if having calcium issues caused it.  It was during my recovery I first started getting symptoms of thirst and passing a lot of water, I thought it was the pain meds doing it!  I am glad I had it done but do wonder if it was caused by FHH.  
The nearest I got to HRT was a Mirena Coil and estrogen patches for 3 years in the middle of it all as I just flooded all the time and my GP was very against it especially as my monthlies went on until I was 58.  The meno blood test is very unreliable, it can swing all over the place. I hope your blood tests show something this time re thyroid, it took me six months at the veginning to get it prescribed, they kept saying in a few months you may need it, by that time my TSH was 15 and the first thing I did when we moved here was sign up at new doctors and he gave it me straight away.
Take care and hugs Sue xx
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Re: Long time away

Post by Lucycatnaps on Sun Aug 23, 2015 8:21 pm

Hi Nelly,
I am so sorry to hear that your stones are still causing you problems, I hope they can get it resolved sooner rather than later, you have suffered long enough with them.
Hugs again, Sue xx
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Re: Long time away

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