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

The TSH of 2+ is higher than ideal and the T4's are low but of course as they are all in range its going to be hard to convince any doc unless they are willing to think outside the guidelines and go by symptoms alongside your borderline results.

You need a GP/Endo who recognises your T4 is to low and has been for some years.

Nelly

I was thinking that my TSH has risen quite a bit since these in the newer ones I posted and they were last year so I'm wondering if it's risen more in yesterday's. I will ring the surgery. On Monday to find out.
A xxxx

The 'infallible' TSH test !
https://youtu.be/tOb2POQGE6g

Edwin

Hahaha it's very funny but really explains the Dr's view on this. How can it make so much sense, that TSH is not a reliable indication of a thyroid problem to us but the so called experts are blinded by this stupid test.
Maybe I should turn up at every appointment dressed like that !!!!! 
At least they might actually look at me.
Amanda xxxx

You know how doctors like to bang-on about medical evidence?

Well, I read recently that the adoption of the infallible TSH test as the indicator of thyroid levels has no evidence to support it.
Apparently is was adopted on the basis of expert opinion and, of course, cost.

Edwin

That doesn't surprise me at all.
A x

Had the abdominal CT scan with contrast. I had one of these 10-15 years ago no reaction at all. 
I had to drink over 1 litre of contrast which I think is barium sulphate then eventually I had cannula put in (after 3 attempts not the most gentle of nurses, I have bruises up both arms and hand) contrast injection was put in during scan, all seemed fine I had to wait to see if any reaction, none showed.
I got home and for the next 6 hours I had violent diahorrea, then that stopped and over night I had what I can only describe as an increase of all the symptoms I have x 100. I was shivering, I had severe headaches, my hands, legs feet and neck were so painful, also my throat hurt around the front and glands under chin, I rang the NHS 111 they said try antihistamines and if it gets worse go to A & E. Antihistamines didn't seem to work but I didn't get worse so I didn't go to A & E. 
I feel a bit better this morning, I will ring CT dept to report it. 
Nelly & Edwin do you know if there is any contraindications for the CT. contrast if you have Thyroid disease ? 
I'm seeing Rheumy on Friday and will tell him, I can't imagine there are any problems with it autoimmune wise as this is what they were looking for and surely someone would have told me (gastro or rheumy) 
Before I had it.
I have googled it and it looks like it could aggravate Thyroid but I'm not sure.
Thanks for your help.
A xxxx

Sounds ghastly Amanda, poor you.

If it was an iodine contrast it could have caused problems but they are rarely used now so probably it was a barium s contrast. I believe thyroid disease is in the list of ailments the radiologist should be aware of before the scan but not sure if it affects how they do it.

There are side effects and we do read on the thyroid forum of people having bad reactions so it does happen quite frequently and many say never again !

Probably best to avoid that test again ! Hope you are feeling better by now 

Nelly

Thanks Nelly
Yes I'm not feeling that bad anymore. I've rung hospital to let them know and they said they will get back to me if DR needs to speak to me about it. I was going to ring GP but I feel he will just use it as another hypercondriac tick on my notes. When I next see someone I will mention it.
I rang yesterday to ask about Thyroid tests and was told all fine no action so I need to get copy to look at myself.
Love A xxxx

It annoys me so much when thyroid results are reported as "fine" or "normal".
The lab report on my thyroid bloods from last week show "normal".

Unlike very many other blood tests where it is OK being anywhere within the reference ranges, it simply does not work with way with thyroid tests.

Each patient will have their own "normal" somewhere within the reference range, but you only find-out what it "normal" for you by adjusting the level of hormone replacement - based on your symptoms (this took me 4 years).

Most people will report feeling their best when the FT4 and FT3 are in the uppper part of the range and TSH below 1 (or even below the range when taking thyroid hormone replacement medication).

Unfortunately, the ony people who know about this are the patients and most docs will not accept this because it does not fit-in with so-called medical evidence.

Edwin

Happy Birthday Edwin  I've just noticed it's today. Hope you have a really great day XXXXX
I'll pick up the results (probably after having a bit of an argument with receptionist, they don't like photo copying anything) tomorrow and report back to you to see what you think x.
I got a call back from CT dept re the contrast I had to drink and the injection and my rather unpleasant night.
Apparently the Consultant told the Nurse to tell me that these are normal side affects and not considered a "reaction". I said to her why wasn't I told what to expect, no one told me anything. I'm wondering if they are just covering their backs !!!!
Anyway I feel a lot better now.
Have a great day celebrating your big day.
Lots of love Amanda xxxx 

Hmmm easy for them to say normal  sounds like pretty extreme side effects you endured Amanda and so bad they didn't warn you of the likelihood of it happening.
Bit like my Lithotripsy, nobody told me it was going to be bl***y agony 

Nelly

Yes it's amazing what they don't tell you isn't it.
I'm just so glad I went straight home and not out somewhere that would have been awful, or gone home by train or bus, as it started 10 mins after I got in and didn't stop.
Also when I initially spoke to the nurse she said she had never heard of that happening and the side affects are usually a rash or flushing.
Well there was a lot of flushing and it wasn't my face !!!!!
Sorry for that  xxx
A xxxx

Good one 

Right well I guess it was too much to ask for my blood test to go my way.
I don't think my Endo will be at all convinced by these results.
TSH 2.81
FT4  9.20
FT3  5.00

Oh well xxxx

Your TSH is still higher than ideal, T4 too low but a good T3. I would say you have a failing thyroid and it will fluctuate until it finally gives up. Worth persuing a trial of Levo at some time if symptoms persist, you just need to find a doc who treats on symptoms rather than numbers.

Nelly

Thanks Nelly
I don't understand why FT3 is 3.5 last test and now 5 and TSH is going up and down. Should they all vary this much ? 
A xxxx

TSH tends to vary the most during the day, but FT4 and FT3 should not change very much (except when you are on hormone replacement).

However, the FT3 is your reserve tank, so I can imagine that it may drop if you have been doing something energetic.  Your body's use of T3 is directly linked to your metabolism.
Back when I was able to do cardiac rehab classes, I needed to take an extra T3 tablet, otherwise I was feeling shattered the following day.

Edwin

Thanks Edwin x

I've just got back from Rheumy.
All endoscopes and 5 biopsies negative. No results from CT but he did say if there was anything serious he thinks it would be showing on the system. So he is of the mind that depending on what the CT does show if it is clear he doesn't think that there is a convincing case for my symptoms being autoimmune related. This is very good news.
He has confirmed that I do have plantar fasciitis in both feet one worse than the other and he suspects that I may have a problem with my lower back which is causing sore edges of heels, so he is arranging physio for both of those problems.
I asked whether he thought my symptoms ie: eye soreness, fatigue especially in afternoon, loosing eyebrows, dry skin & hair and general joint pain could be Thyroid connected and he said yes but because your blood tests are all within range the Endo may not see any problem. I said to him eye Dr said its either inflammatory or thyroid connected so if he's saying it's not inflammatory (dependant on CT result) would it not make sense to have a trial of thyroxine as opposed to a trial of steroids. He said I think that makes sense but don't quote me on that Endo may disagree but ask her advice.
So I'm here patiently waiting in Limbo Land Caff. Mines a cappuccino no chocolate sprinkles ta.
Love Amanda xxxx

That sounds positive Amanda, gives you some ammunition for your next Endo encounter, no reason why you can't tell your Endo what Rheumy's opinion is. If she won't play ball definately worth a second opinion, keep at it 

Nelly

Thanks Nelly x

Can hypothyroidism cause osteopenia because since my PTH op 2 years ago the last dexa scan in the beginning of this year showed it worsening. Would hypothyroid explain this ? 
A xxxx

Could do if underactive for a long time, trouble is it is easy to blame thyroid for everything so we can't really ever definititly be sure what has caused the problems in the first place but its worth ticking that on the list of evidence to show your endo.

Nelly

Thanks Nelly x