I'm new here and trying to get a diagnosis

[Thistle2755]

Hello, I'm 62 and female. For the last 7 years or so I have seen my doctor on various occasions with all sorts of apparently unrelated symptoms, such as tingling hands and feet, always cold , hot sweats, swollen feet and hands, terrible lethargy, weak eyes, and generally feeling very unwell. My doctor is excellent and each time has done full blood counts, and various other tests. In the course of those has found I tested positive for helicobacter pylori one one occasion, then a scan revealed I had a large gall stone, which led to my gall bladder being removed. Each time I thought we had got to the bottom of how ill I felt,as did the doctor, but neither "treatment" has made much difference- I have just got on and lived with feeling off. I have had a stressful time over the last year, nursing my mother in law until she died, and I don't think I paid much attention to how I felt. Now though I realise I still feel generally very rough at a time when life is offering me lots of great opportunities and I'm just too tired. Two weeks ago I went back to see a new doctor in the practice who straight away explained my symptoms sounded like thyroid problems and ordered tests for hypothyroid and auto immune system. I went straight home and found this website, which listed all my symptoms and discovered more- I have no half moons on my fingernails and my nails are ridged from top to bottom and split from time to time, and I have certainly got "brain fog" to name a few.

I went back to see the doctor to be told my results were normal - no antibodies , no infection anywhere, no deficiencies anywhere. I explained to her how typical I felt of those suffering from Hashimotos, and thanks to all of your advice, I persevered and asked to be tested for T3 T4, so she has reluctantly agreed- to prove a point I think, and I await results. I fear I'm going to be like so many here who have lots of symptoms but "normal" results. If this next test is "normal" is it ok to post the results here in the hope someone can interpret them, as I really haven't a clue what I'm looking for? I finally feel I have "joined the dots" of all my symptoms , but given I appear to be perfectly healthy according to my doctor, I don't know where to go next. I really appreciate all I am learning here, but it seems very complex.

Much appreciated

[Nanaedake]

If you post your thyroid results here with laboratory ranges people will tell you if they are 'normal' or out of range.

[Hidden]

There is a lot of ignorance in the medical community regarding "normal" VS "optimal" ranges. If you have been on the site for a while there's a LOT of discussion about this. Many get their labs done thru private clinics for that reason, also that the private labs test for much more than the few levels via your NHS. Critical levels such as free T3 are often not tested unless specified!

Here's a good link to read about optimal test ranges

stopthethyroidmadness.com/l...

When you have your next bloodwork (don't forget to fast beforehand - water OK - and no Levo for 24 hours for most accurate results!) be sure to create a new post and list the results line by line (with ranges in brackets) for the best feedback.

[TSH110 in reply to Hidden]

Hidden i don't think Thistle 2755 is taking any levothyroxine yet.

[TSH110]

Don't accept the doctors opinion of your health - you are the one inhabiting your body not her! Get the results (with ranges) and post here. Ask for a print out of them with ranges for your records at your surgery - they can't refuse it is your right they may ask for ink and paper money. Post them here and you may be surprised by responses - a doctors normal is not always normal or good or you. Being in range is not the same as having optimal thyroid hormones for good health.

[Thistle2755 in reply to TSH110]

Thank you very much. I'm so grateful for advice and help, it's just having the strength to battle on when I sense I'm being treated as if this is all in my mind. Couldn't be further from the truth. I'll get the results next week and post tehm up in the hope someone can make sense of them.

Much appreciated

[TSH110 in reply to Thistle2755]

Thistle2755 this is the trouble it takes so much out of you then to have to fight doctors to actually do anything other than fob you off it can be too much and is really disgraceful they are so stupid they cannot even see an ill person before them why on earth did they choose the profession - status and money is all I can think. Why are they not keen to investigate and find answers and get their patients better - after all they can actually make a huge difference in our case - something has gone really wrong with this lazy just blame the patient attitude some doctors seem to have. I had to fight to get a thyroid test when I was close to pegging it - just take some more antidepressants but I fought it and to the GP's credit he moved heaven and earth to help me after that. I went for years asking if my endless ailments might be hypothyroidism given my grandma, mother and sister all had it but it was simply dismissed in favour of the menopause so I basically gave up and struggled through each day as best I could but the menopause finished and the symptoms did not. Fancy all those years of unneccessary suffering - my face is all fallen on one side and the eyelid droops in the evening - I wonder sometime if I had a stroke or something to make it that way. They thought it might be myasthenia gravis but tests were inconclusive some signs but not enough for a definite diagnosis. It does not seem to be getting worse anyway. The way I look upsets me a bit sometimes, but mostly I am grateful for each extra day I get 😊

You should keep battling so you do not end up in the sort of mess I got into with it.

🍀☘️🍀

[Thistle2755]

I'm not on any medication yet, just at the very early stages of diagnosis, but already concerned that tests are "Normal" yet I have so many symptoms, adn ahve had for a long time.

[TSH110 in reply to Thistle2755]

I bet you will find they are anything but "normal" if you post them here. When I did get the test results, mine were so grossly abnormal they could not argue the toss but why the hell should anyone have to get that poorly before anything is done? The first one came back hyperthyroid as my thyroid died and dumped all it had left then I plunged into eternal hypo it was really horrendous. I just got the tablets in time to save me. You may get short bouts of hyper then longer periods of hypo, which looking back I did, if yours is autoimmune hypothyroidism and this can muddy the test results as it vacillates and it may appear normal if just TSH is used as the indicator. Not everyone gets positive antibody results either but they definitely have autoimmune thyroiditis. Perhaps the doctor could explain what other illness is causing you symptoms if it is not hypothyroidism. Mental illness seems a popular cop out choice...off we go back to the 1800's....so probably best not to ask! I believed I was a hypochondriac for a very long time but I was nothing of the sort

[Thistle2755 in reply to TSH110]

I'm really interested in your reply - my symptoms seem to come and go, but I have periods, like now, which lead to me going to the doctor when things feel much worse- Can hypothyroidism come and go, as in "attacks" or "flushes"? This is how I feel, like I am being attacked from within and trying to fight it off, with no success - it just goes on and on. The more I read the more I realise how complex a condition this is. I'ii get my T3 T4 results this week and post them with all the rest, in the hope that you kind folk out there might be able to interpret "normal".

Many thanks for all your help and support.

[TSH110 in reply to Thistle2755]

It could be the antibodies having periods of activity then inactivity. I think autoimmune diseases can have periods of remission and activity that might explain your pattern. I am not an expert on this though. I have had arthritis/ankylosing spondylitis since 23 but this has come and gone symptom wise and it often goes into remission according to the info given about it, it is also an autoimmune disorder. I had definite symptoms of hypo in my 30's but kept going ok and was not diagnosed till 53. It must have been variable in my case. I became increasingly unwell in the last few years. How I kept going amazes me now. I had a voice telling me I was dying for some long time - I thought it was a bit odd but maybe everyone got it and it was of no significance. It completely stopped after I got treatment. I think your body must know things are going decidedly wrong and tries to communicate this to your conscious brain however it can. I have never seen anyone else admitting to such a voice. I used to smell loads of awful smells everywhere drove me nuts - apparently it was nasal hallucinations 😳 caused by the hypo. In the later stages I got very frightening visual hallucinations like looking in a mirror to see a skull staring back at me - super creepy and like the voice, sending out a very clear message that the end was nigh. I really did go quite mad but again even this was in bouts and I'd swing into some other hideous mood for a short while - utter chaos

[Hidden]

Thistle: if you head over to the thyroid U.K. Website and click on "contact us" they supply a list of "Thyroid friendly" docs on request. You may want to consider going private at some point to avoid continued road blocks. (I would post the link but this site won't allow me to do so!😖)

[Thistle2755 in reply to Hidden]

So very much appreciated Rusty. So far my doctor is doing what i ask of her, but if the T3 T4 test comes back as "normal" I'll have no choice, as she doesn't know where to go from here. She tells me she is already pushing the boat out with these tests. |My mum was diagnosed as coeliac and it took her 5 years of awful illness and eventually when her doctor ran out of ideas, a visit to a psychiatrist diagnosed her as the sanest person they had ever dealt with. By the time her coeliac was diagnosed her health had deteriorated so badly she never really recovered. I've seen the terrible fight for answers at close quarters and I have no intention of lying down to this, whatever the ailment I have, is. I really appreciate the kindness and support I've had in the last 24 hours. it gives me the courage to carry on.

thank you

[Hidden in reply to Thistle2755]

Good. You've got the spirit and the will to do what's necessary! It seems the majority of docs are not equipped to deal with chronic illness such as these so we are left to fight to get referrals, find the right specialists, or go private - as seen in many cases. It saddens me when I see individuals posting here who are so beaten down they are no longer equipped to advocate for themselves and have no resources (physically, financially, emotionally) to move forward. PS: When you get those results create a new post as we don't want this to to get lost in the lineup of older posts here OK! X Rusty

[SeasideSusie Remembering in reply to Hidden]

Here you go Thistle2755

thyroiduk.org/tuk/About_Us/...