Long time away

First topic message reminder :

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

Having osteopenia isn't a problem with chiropractic treatment unless he/she is intent on bone cracking manoeuvres which they shouldn't be doing anyway. 

I wouldn't go to an Osteopath as that is more about crunching bones whereas a Chiro is more gentle muscle massage and repositioning the joints. My pelvis goes wonky and tilts one way and my leg shortens  but after 30 mins of treatment with blocks and massage she has straightened it all out.

I have never had any luck with Physio, did nothing for my back and when I was referred last year for a wrist injury it was a complete waste of time but my Chiro worked on my wrist and did some acupuncture and fixed it.

My Chiro is a treasure, been with her over 20 years, Edwin has been going to her for his bad hip and leg so he's now hooked as well 

Nelly

Wish I lived near you 
Xxxx

Hi All hope you didn't get washed away by the rain over the bank holiday weekend.
Has anyone had tingling/numbness/twitching around their mouth/top lip and up to nose ?
I know it's a bit weird but I've had this for 4 days now and it doesn't seem to want to go. No good going to GP yet. I've got an appt on 16th but I'm just wondering if anyone had any advice. It can't be low calcium as I've got FHH.
Love Amanda xxxx

Morning Amanda,

As low calcium is out of the mix it would make sense to add it to your hypothyroid list as it is one of the symptoms. Twitching eye lid is another common symptom so watch out for that one, its really annoying . Of course there are quite a few others causes for tingling so probably best to check it out anyway. 

Lovely sunny day here, off to Devon shortly to put up curtain poles and hang curtains, eldest and boyfriend move into the cottage today 

Love
Nelly x

Hi Amanda

I had that tingling around the mouth only once post PTH-surgery and I understood it to be a sign of low calcium, so I took a couple of the Calci-Chews that I had been sent home with from the Hammersmith, and it went away quite quickly after that.

I agree with Nelly that it could be part of your low thyroid symptom picture.

But a devilish part of me would insist on a Calcium blood test just in case (in your shoes) this was indeed an indication of low Calcium and your FHH diagnosis was a false positive. I hate to say this and don't wish to upset you at all but I still can't understand how you could have had a PTH adenoma removed and yet have been diagnosed with FHH, if they cannot somehow co-exist (which I have read that in rare cases they can).

My not-wanting-to-upset-you side is telling me to push off now (and you can tell me the same thing, too, Amanda!) but it is such a distinct symptom of low Ca that I felt I should mention it.

Pushing off now - but with lots of love - Tigerlily xxxx

Hi Nelly & Tigerlily
Nelly I hope you had a great productive time helping your Daughter & Boyfriend sort out their cottage.
Tigerlily my last blood test for calcium was about a month ago and it was 2.57 so for my FHH profile that was a good level.
I did think....... I wonder if..... so I had two lots of chewable gaviscon to see if it made a difference but no change.
I don't know what it is but I'm seeing GP on 16 th re blood tests I had recently, so I'll have to wait until then as I think they already think I'm a hypercondriac so I don't feel I can bring this up.
I would never tell you to push off, I really appreciate your help and I wouldn't be surprised by anything my body is doing nowadays !!!!
Love Amanda xxxx

Bless you, Amanda - thanks for that.

So sorry you are going through so much that looks endocrine-related - i.e. low thyroid function- and they won't help you to identify it. The medics sometimes get so entrenched in their own views (especially with the "informed patient", like most of us here) that they then seem to get on the defensive, and nothing gets done.

It's happening to me all the time with this face/jaw swelling. When they decide there's nothing wrong, or if they've read my previous notes and thus don't want to take things further in the first place, they tell me they can't see any swelling. It's subtle and diffuse and only women tend to agree that they can see it. Inside my neck, my throat feels full and sore - but on the outside of the "tube", not inside it like with an actual sore throat. This is the thing that worries me about it the most. I have visions of it being something nasty brought on by the red wine!

Sorry to hi-jack your thread, Amanda. I'll post an update on the Addenbrookes consult last week in a separate post - but basically he couldn't see it either, but will be getting the MRI pictures for his radiologist to read. Luckily he sent me for an US straight after the consult (I had a meltdown just before we left and that's how he dealt with it) and the radiologist could see it quite clearly in the lower light levels of the US suite - so that was something of a result. back to the waiting now.

Perhaps you could ask for a trial of thyroxine on 16th so that they can prove to you that it is not low thyroid? Although I don't suppose they do that, do they, Nelly?

Keep us posted, Amanda - Love from Tigerlily (another one they think is a hypochondriac!) xxxx

Oh, my goodness, it's so disappointing to get back on here and find that my forum friends are still suffering so badly!      I am having a ton of issues myself, but I was hoping SOMEBODY was showing some improvement with theirs!      I agree that without all the support from the forums and support groups, I would be lost and much more distraught over it all!

Amanda, I just reread your list of symptoms at the beginning of this thread, and for a minute I thought I had posted them!      They are almost identical to my symptoms!   I don't have red, blotchy skin, and I do have a LOT of edema.   I do suffer from every other symptom you listed up there!     I was just wondering something.    Have you by chance had your ferritin level tested lately?    I am asking this, because I am almost certain now that low ferritin has been the cause of many, if not all, of my symptoms for MANY years.    

I was found to have an iron deficiency back in March.    Once again, I had diagnosed myself with this deficiency.    I took a list of tests to my PA and asked her to order them for me.   I told her I felt very strongly that I had an iron deficiency.   She said there was no reason why I would have an iron deficiency, but she eventually agreed to order the tests.

The results of these tests revealed that my iron level was low/normal, my hemogloin was low/normal, and my ferritin was VERY low/normal at 11.   Reference range is 11-307.     I knew I was onto something.     My PA looked at the results and said there was not a problem, since everything was in the normal range.   Through more research, I knew she was wrong.

I made an appointment with a hematologist.   He took 1 look at my results and told me I had an iron deficiency.   He prescribed iron supplements.    He was trying to figure out why I had this deficiency, since I was through menopause and no longer had menstrual periods.   I had a hunch it was because I am a vegetarian.    I told him I was a vegetarian.   He said, "BINGO!"  

The reason I think I've been iron deficient for many years, is not only that I've had some of these symptoms for over 30 years, but I stopped eating red meat about 40 years ago, and ALL meat about 20 years ago.     So chances are very good I've been deficient for a very long time.

The symptoms of iron deficiency and hypothyroidism are very similar, and it is a well-known fact that ferritin is needed to help the cells of the body absorb and utilize thyroid hormones properly.    

 I have been blaming all of my symptoms on my thyroid, but my thyroid levels now look good.  STILL, I have all of the stupid symptoms.     It is now all starting to make some sense.

My hematologist told me it could take up to 6 months for my iron levels to replete.   I just had it checked again a few days ago.     As mentioned earlier, it was 11 when first tested back in March.   It was up to 35 two months ago when I had my PA recheck it for me.    This time it was 29.     Through more research, I have learned that an optimal level of ferritin for a woman is 70-90.     I have a long way to go, and, obviously, on the dosage of iron I am currently taking, my ferritin is not ever going to reach 70-90!

Also, with this last labwork, my red cell count and my hemoglobin were both revealed to be even lower than they were when I was diagnosed with the deficiency almost 6 months ago.     

I will see my hematologist again on the 17th of this month.   I am just praying he is aware that the optimal range for a woman is 70-90.    If he doesn't, I am afraid I will have to take this into my own hands and increase my iron supplements until my ferritin is up to at least 70, to prove one way or the other if it is the low ferritin causing all of this crap!!!!    

If you haven't had your ferritin tested lately, it might be a good idea to do so.

Tigerlily, are you STILL having trouble with a swollen jaw?!!   That is awful!!!     I can't imagine why somebody can't figure that out for you.    You poor thing.     Why is it so difficult for our doctors to do their jobs and help us?!!   

I do hope to hear some positive news from you dear members soon!   We need some good news!

Audrey

Hi Audrey
Sorry you are still having lots of problems with your health.
My iron levels have been a problem for about 8 years. Despite seeing many haematologists they cannot tell me why I can't store iron. I've been having iron infusions every year since then as I can't easily tolerate oral iron. I had my last infusion in Dec 14 and I've never felt worse, many of my new symptoms have been since this infusion but no one can relate any of it to this. So the next time my iron is dropping I'm going to try to take some form of oral iron instead. 
I'm not vegetarian so it can't be related to this. Also all my other levels 
ie haemaglobin are all good. I guess I'm just a mystery.
Love Amanda xxxx

My goodness, Amanda, why do things have to be so complicated for so many of us?!

I am so sorry you too are having such issues with your iron on top of everything else!

I saw my hematologist 2 days ago.   I will be posting regarding this appointment very shortly on here.     He wanted me to double my iron dosage for a week and then triple it.    He said he started me on the low, starting dose to make sure I could tolerate it.     He did tell me that a lot of people have stomach issues with the type of iron I'm taking.    I asked him if there wasn't an enteric-coated iron supplement or something that would be easier on the stomach.   He said there is, but he wants me to try this first, because it's cheaper.    I appreciate that he was trying to help me out with the cost, but I think I'd rather pay a little more and have a comfortable stomach.

Also, do you take vitamin C with your iron supplement?    If I'm not mistaken, I think you're supposed to take the C an hour before you take the iron.    The vitamin C helps your body absorb the iron.    My hematologist prescribed C for me, but I stopped taking it, because it irritates the bladder, and an irritated bladder is more susceptible to infection.   Since I have recurrent UTIs, I opted not to take the vitamin C.     My ferritin is slowly improving, so I am still absorbing the iron.      There is 100 mg of vitamin C in my multivitamin.    Maybe that is helping.

I hope we both can get our iron levels repleted soon!!

Audrey

Hi All
An update on latest blood tests.
Ferritin 219 that has stayed very high since infusion in Dec 14, just wondering how high it went when they did it !!!
No sign of any menopausal drops in hormones etc
No sign of diabetes 5.1 mmol range 3.30-6.00
Full blood count ok
Thyroid
TSH 3.24 range 0.34-5.60
FT3 5.30 range 3.80-6.80
FT4 7.80 range 7.50-21.10
GP couldn't find anything wrong said she didn't know what is going on..... end of conversation.
I am now seeing another private Eye specialist as eyes still sore. He has said stop all drops for 2 wks to see at baseline what is going on. No damage to front or back of eye just irritation and red lids. No blepharitis and they don't seem to be excessively dry so he definitely doesn't think it's Sjogren's.
I am also getting very sore upper gums, tongue and sinuses feel sore as well. I told all of this to GP but they just said wait to see Rheumy in Nov.
Must confess not feeling on top of the world ATM the only good news I've had recently is that my local Art Gallery have asked if they could sell some of my Watercolours and have 5 currently on display.
Hope you all aren't suffering too much sorry I haven't posted much of late, trying to work, deal with the soreness and do a bit of art is quite difficult.
Love Amanda xxxx

Hi Amanda

Although your FT4 and TSH are within their respective reference ranges, I am horrified, but not surprised that the GP thinks that there is nothing wrong with your Thyroid results.

To anyone with even a limited experience, you are in need of hormone replacement, as it is obvious that there is a problem.

There is an oddity, however.
Your FT3 looks good, which is not what would normally be expected with such a low FT4.

Ideally, both the FT3 and FT4 should be in the upper half of their respective reference ranges.

Perhaps a referral to an Endo is worthwhile?

Edwin

Hi Edwin
I don't think the GP looked at anything other than the "normal no action" heading, I did say to her my thyroid levels were all over the place but she just said she was sure that it was normal and they do fluctuate.
The FT3 has always been on the bottom level of normal so I'm not sure what happen there. It was a fasting test as they did diabetes as well, I don't know if that makes a difference.
Would the fact that my levels aren't stable make me feel unwell and are the burning gums, tongue, sinuses and eyes a known symptom ?
I don't think I've felt more unwell even in peak PTH mode.
I think I need to try and find another Endo who actually knows about Thyroid as I know I won't get anywhere with the GPs or Endo I have now.
Thanks for your help.
Amanda xxx

Is delayed skin healing a symptom ? I've had a blister on my heel for approx a month and despite not getting it rubbed again it still hasn't properly healed. When I get spots on my face !!! Unfortunately I seem to be getting them more, they take months to heal 
A xxxx

Hmmm.  I've not heard of this as a Thyroid related symptom.

Edwin

I've just been to see Private Opthalmologist.
I have now seen 3 NHS ophthalmologists who's diagnosis have been. Conjunctivitis, dry eye, blepharitis. 
1st private one said, inflamation don't know what's causing it can't really help.
This one has said, yes there's a problem, not sure why, could be thyroid !!!! He knows what my history is and said "you need to see someone who is going to look at you as a person, your symptoms  and not just blood tests and join the dots up" !!!! It's deffo not conjunctivitis, dry eye or blepharitis !!!!!!!
I couldn't believe it, he has recommended Endo at Spire Harpenden (private) he is writing to him and will send me details to make an appointment.
I do feel at least he's on the same wavelength. I'll keep you posted.
Love Amanda xxxx

Soooo glad, Amanda! Sense from someone at last!!!

I bet you feel really great about this - have a dig in your wardrobe and find something nice for the trip to The Ritz! It cometh ever nearer!

Lots of Love from Tigerlily xxxx

Thank goodness Amanda, hopefully you will get somewhere with this one, we will look forward to an update.

Good luck

Nelly

Thank you I do hope I'm not getting excited for no reason. To hear him say "you need someone to join all the dots up for you and make you better"  I could have cried xxxx

Hi All
Does anyone know what the normal levels of Ferritin should be in a female ?
Mine is 215, I'm just investigating if iron overload could cause sore eyes.

Many thanks Lynne

Just had a quick look, Amanda, and up to 150 seems to be the range for females, so you might be a bit high. 

Have a look at labtestsonline.co.uk for information and also google "iron overload" as it seems you can get this from frequent infusions.

Let us know how you get on.

Love from Tigerlily xxxx

Hi Tigerlily
Thanks, labtestonline don't have levels. I have looked it up on google and haemacromatosis (I think that's correct spelling) has some link to sore eyes but noting is telling me if the level of 215 is enough to cause this.
I have emailed the private eye DR to see what his thoughts are.
Thanks again xxxx

Hi Amanda

How about this:
http://www.rixg.org/results/iron.html

Edwin

Hi again Amanda

This is also interesting:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2718721/.

Must read it myself as I have dry macular degeneration and there is a link between that and high ferritin - must get my ferritin tested. The test I had previously "failed", or so it said on the lab results.

Good Luck with your research.

Love from Tigerlily xxxx

Thank you both.
It looks like up to 250 is ok so it shouldn't be test causing problems.
Back to the hypothyroid investigations. I'm getting details in post of Endo at Spire Harpenden and will be booking that appt ASAP.
Love Amanda xxxx
How is everyone doing ? X

Hi Amanda

Here is the reference for the level of 150 ng per ml maximum ferritin for females that I gave earlier:

https://www.nlm.nih.gov/medlineplus/ency/article/003490.htm

Do you think that could mean that your 215 is a bit high? Depending of course on whether we are talking the same units or not. 12 - 300 was the range given for males and 12 -150 for females.

Love from Tigerlily xxxx