Long time away

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

Hi Amanda, 

Sorry can't remember, have you had a hypothyroid diagnosis in the past  ?

If not then your symptoms are classic and your Endo should be going down that route, do you have thyroid test results to show us ? If your TSH is above 2 and T4 and 3 low then its highly likely a thyroid problem. If its the autoimmune type, Hashimotos,  then your levels will fluctuate and if borderline as well then it may take a while for your Endo to agree. You could ask for a trial of thyroxine to see if it helps with symptoms but its not a quick fix.

As some of us know only to well para surgery messes up the thyroid, shame the Endos don't listen !

We are more than happy to talk thyroid so ask anything you want. 

Nelly

Hi Nelly thank you so much. These are all the Thyroid results I have.
13/3/14
TSH 2.69      Range 0.34-5.6
FT4 7.20                 7.5-21.1 this was noted as low.

25/3/14
TSH 4.01.    Range 0.35-5.5
FT4 11.6.               9-22.7
FT3 3.5.                 3.5-6.5

4/9/14
TSH 3.09     Range 0.35-5.5
FT4 12.4                9-22.7
FT3 3.6.                 3.5-6.5

Apart from the one low FT4 I have been told these readings are all fine and not indicative of any thyroid problem.

Thanks Lynne xxxx

I have bloods to do before I see Endo in July 
FBC
U & E
Bone
PTH
VIT D
TFT (TSH FT4)
FSH LH
What is the best time to have the thyroid levels taken and should I fast for it.
Thanks xxxx

Those results are defintately hypothyroid, the TSH is to high and your T4 and T3 way too low, if your thyroid was working fine the your TSH would be low, T4 and T3 in the top half of the range and yours clearly are not, your endo needs a kick.

Thyroid bloods are best done early morning, you don't need to fast for them, ask for thyroid antibody test as well.

Keep us posted and shout if we can help with more info.

Nelly

Thank you so much Nelly I really appreciate your help especially as Edwin is struggling.
Love Amanda xxxx

Hi Amanda

One of the really big problems of dealing with doctors and endos is that "fine" and "normal" do not exist and should never be accepted.

What they mean is that your bloods faill within the reference range.
Unfortunately, the reference ranges are only of academic interest, as that do not reflect individual patient's optimum levels.

You are lucky in that you have your FT4 and FT3 results, which give the real picture about the level of T4 and T3 available in your bloodstream and these clearly show that you need thyroid hormone replacement (or an increase if you are already on medication).

Applying the reference ranges to everybody is a misuse of statistics. as a result, the TSH is virtually meaningless.  Most people will have obvious hypothyroid symptoms with a TSH above 1 - 1.5.

Edwin

Hi Edwin
I'm sorry you are feeling so unwell thank you for replying to me.
As I have never been diagnosed with any thyroid problem I'm not on medication. My rheumy is desperately trying to pin it on Lupus/vasculitis/some other inflammatory autoimmune disease so he can give me a steroid injection. Not one blood test shows any sign of this but as I had vasculitis 19 years ago, which disappeared after appendectomy and removal of said area of vasculitis. All bloods showed raised markers for it but went within 3 months of op, he thinks this is the problem !!!!!
I have written (no phone calls/emails are accepted) to Endo with list of symptoms asking for her to look at them and see if she can give me some answers. I have even seen a private consultant re eye problems after 3 different NHS ones gave 3 different diagnosis. He said it is something causing inflammation and could possibly be thyroid but could also be autoimmune although he didn't know what.
I'm trying to get appt with GP but nothing available until early June, unless it's an emergency !!!
If I don't get anywhere with Endo this time, appointment in July. I will ask for 2nd opinion elsewhere. I'm sure I could have been diagnosed with this last year and be feeling better now. Also my periods stopped in November, no warnings. I just presumed menopause, do you think it may be Thyroid instead ?
I think Endo was just interested in FHH diagnosis and has dismissed me now she's got her glory.
Hope you feel better soon.
P.S Do thyroid problems make you pee a lot ? Thought pth did that but it's back again.
Love Amanda xxxx

Eye problems are more common when hyperthyroid but can and do happen when hypothyroid, the dwindling thyroid hormone will affect every cell in your body, periods definitely, weeing more, quite possibly, everything will be affected. 

Nelly

Thanks Nelly
I have read that hypothyroid can contribute to osteopenia, is that true and can make acid reflux worse. I have both these conditions and wonder if hypothyroid is making these worse. Also I have suddenly developed really sore gums, dentist unsure why and I seem to be clenching my teeth and have to consciously stop doing this. I thought it was because I was stressed but I've never done this when stressed before.
Amanda xxxx

Yep all those you mention can be put down to thyroid problems but equally may not be, hypo people tend to label all symptoms as thyroid so the tricky bit can be sorting which is and which isn't. I'm sure many hypo people have hpth but don't do anything about the symptoms because they assume its just thyroid playing up again.
With your results I think you can safely say most symptoms are probably down to being hypothyroid. Hopefully your next bloods will show a higher TSH as that is the one docs are obsessed about even though it is pretty useless, its the low T4 and 3 that show you have little fuel in your tank !

Nelly

Yes I agree, I could be hoping everything is related to it. If the thyroid was damaged during the pth surgery it might explain why I felt really well for about 3 weeks directly after, then have been going down hill since.
Thanks for your advice and support, it's something I'm not getting from my DR's. I can't even get GP appointment until June.
A xxxx

Hi Amanda

Your biggest challenge is to persuade your doc/endo to take notice of your symptoms instead of only focussing on a blood result (TSH) that is known to have limited value due to the ridiculously wide reference range.

Here are links to a couple of articles that should give you some background info:

http://www.nahypothyroidism.org/why-doesnt-my-doctor-know-all-of-this/

http://drmalcolmkendrick.org/2015/05/01/treating-thyroid-patients-like-children/

Edwin

Yes Edwin unless the bloods I have done prior to my appointment with Endo show something dramatic I feel it will be yet another battle. If this is the case I will ask my GP to refer me elsewhere (delaying everything again). I'm hoping as I have written to her giving new symptoms she may be more open to it. That is if I even get to see her and not the registrar. 
Very interesting articles, loved the bit about consultants idea of keeping up with their training as one conference a year in an exotic location (no wonder the NHS is broke).
A xxxx

Actually, your GP should be able to deal with this, without reference to an endo.

You have classic Hypothyroid symptoms and your blood results simply confirm this.
You should start on Levothyroxine ASAP - probably 50mcg initially and review in 8 weeks when it will probably need increasing.

Levothyroxine takes about 6 weeks to get up to speed.
What usually happens is that you gradually feel better and then it stops.  This is the point when you will need a further increase.  It takes time for your body to adjust - there is no quick fix with Levothyroxine.

Your GP needs to check TSH, FT4 and FT3 regularly (usually every 3-months) until you are stable and it is really important that FT3 tests are included as this is the active hormone and will show if you are under or over medicdated, as well as how well you are converting T4 to T3 (which is most important).

Beware, you can gave apparently OK TSH and FT4, but still have bad hypo symptoms if your FT3 it too low (although docs are mostly unaware of this).
If this happens, it can be due to a range of things, such as low Vit D, B2, Iron, adrenals, for example, which can inhibit T4 to T3 conversion and absorption (or, in my case, missing and broken organs). 

Edwin

Thank you Edwin
I'm trying to get an appointment sooner than June and I will be taking a full list of my symptoms and all the thyroid blood results I have.
It would be fantastic if the GP could deal with this as I'm feeling pretty rough at the moment.
I'm sorry you have both broken and missing organs and it make me feel such a whimp when I'm wingeing and my health problems are minor compared to yours.
I do hope you are feeling a bit better and thanks for finding the time to give me so much brilliant information and advice, it's much appreciated.
A xxxx

I have great sympathy for you.

Having undiagnosed and under-treated hypothyroidism is a really horrible place to be and you need to be proactive to ensure that you get proper diagnosis and treatment.

Edwin

Thanks Xxxx

I have just received a reply to my letter to Endo (no email address). I listed symptoms and new ones and said I didn't think it was autoimmune as all blood tests are negative and asker her if she could review my blood results in view of the symptoms. Her rely was "it is useful for you to have documented your ongoing symptoms" (rather condescending) "As we have previously discussed I do not think any of these are associated to FHH. It would be helpful to await the results of your further gastroenterological investigations. I note your US and sestamibi did not show any evidence of an adenoma."
I do wish this woman would get off the FHH merry-go-round and actually look at my results and symptoms. I think she has labeled me as a neurotic pain in the a**e and can't see past that.
The fact that my gastro appt has been put back 2 months since endoscopes were done and when I asked in recovery room what showed up, the answer was not much, they took biopsies but only as a matter of course. I have CT of bowel beginning of June but I'm sure it won't show anything inflammatory and that was only ordered if endoscopes were not showing anything.
I just feel I'm going to be fobbed off and probably will only see registrar.
I've got an appointment with GP on 27th (got a cancellation) I will ask him if he can diagnose me, obviously after more bloods. I'm not holding my breath he is quite difficult. (This is the GP who last time did the whole trying on of his new glasses and asking my opinion, instead of doing his job !!!).
A xxxx

Have you talked about thyroid with the endo ? your symptoms plus low T4 and 3 indicate a problem which she is just not seeing, probably because she is looking at your TSH

I would write back and spell it out to her, ask for a low dose trial of levothyroxine to see if it solves the problems.

Same with GP, point out symptoms, low T4 and 3 which are the active hormones and as you are low in them it shows your thyroid is struggling.

Hard as it is, just got to keep on battling

Nelly

Hi Nelly
I have discussed Thyroid problem previously with her but was dismissed as, you levels are within the limits, I seriously doubt you have a problem and we don't need to introduce more complications.
She is very hard to talk to.
Love A xxxx

I have written to her asking her opinion on blood tests (I've given her all I have) in relation to my ongoing symptoms, if they could indicate a thyroid problem.
What I need now is all the autoimmune tests to show negative which so far they are and I've only got CT to go and she won't be able to hide behind that explanation.
I have asked for a trial of levothyroxine to see if this helps my symptoms.
I'm sure she won't be happy but like you said if I don't keep pushing it no one else will.
Thanks Amanda xxxx

hi Nelly & Edwin
I've been having really painful muscle cramps in one leg since Friday its in front of thigh and calf muscle. I can't seem to get rid of it, I've  tried everything stretching it and massage. Are muscle cramps connected to hypothyroid problems.
A xxxx

Yep common symptom, muscle aches and cramps particularly in the lower leg, patient UK says 20-50% of hypo people have cramping muscles.

Some people use magnesium supplements for muscle probs, Edwin gets bad muscle cramps so I bought a magnesium spray by BetterYou that you rub in but not sure how successful it was.

Hope you can find something that helps.

Nelly

Thanks Nelly, I've got some of that spray I'll use it. I've never had really bad cramp in anything other than foot. It's almost as if I'm getting a new symptom every week.
I hope you and Edwin are as well as possible and able to enjoy some of the warm weather we've had over the weekend.
Love A xxxx