Trying to help my friend who is feeling very helpless. I think its Hyperthyroidsim, can you help advise me on a course of action??

My Friend, has been suffering now for years but in the last 18 months its been really bad, it all started when she tried to use the contraceptive pill her hormones went haywire and she hasn't recovered since. Because of this we were convinced of some kind of hormonal imbalance, I trawled the net for answers and came up with diet changes etc. She visited the doctor and they tested her thyroid which apparently came back normal so I never looked into it further. Today I have had to sit with her because she is so distressed and upset, she cant work, she can barely leave the house, shes so depressed and I worry so much about her now. I decided again today to google her symptoms and came across the Thyroid UK site and it seems to me she may have hyper. She has severe night sweats and says she feels like theres no liquid left in her when she wakes in the morning, she is suffering severe anxiety has lost a lot of weight despite having a very big appetite, shes shaky and nervous and at the moment constantly crying, she has mood swings and loses her temper easily. She has diarrhoea almost every day and has to go to the toilet frequently, her periods are always irregular and tends to suffer more around the time she is due to have her period. Shes always tired yet can be hyperactive and very talkative and has also complained of feeling achy all over, she struggles to get out of bed she feels so exhausted. I don't have her previous test results (I know her iron is low) but we are due to go to the doctors on Friday and I plan to ask for her other results so we can post them on here. Im there to fight her corner as she feels like shes bullied into trying other meds (anti-depressants) and they refuse to let her see a specialist but I am ready to demand that. I just want to go with her Friday armed with everything I can so any advice you can give would be great, I have already written down her symptoms and the tests we want done and that we want to see an Endo (there seem a lot in b'ham) I am really glad this forum is here and I can show her she isn't alone, I think it will help.

15 Replies

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  • Your friend's symptoms sound very much like mine, just before I was diagnosed as hyperactive. I had been seeing many different doctors in the practice but it took almost six months before one of them realized what was wrong. Her doctor should do a new blood test, checking T4, TSH and thyroid antibodies. I believe if he just listened to her heart and took her pulse he would know. That is how I was diagnosed. The blood test just confirmed it. She is so lucky to have you to help her, as I know how ill she is probably feeling. I wish you lots of luck with the appointment. Do let us know how you get on.

  • Just also remembered that her doctor is obliged to send her to see an endocrinologist within two weeks of diagnosis. It is taken very seriously, owing to danger to the heart and bones, so I hope once you have a diagnosis, action should be swift.

  • Hi Hennerton I am interested to read your comment saying your doctor is obliged to have you seen by an endo within 2 weeks of diagnosis. I was diagnosed on 15th Sept and had a letter from my hospital saying I would be seen within 12wks. That's their policy they must see out patients within 12wks of referral. Is there something in writing stating the 2wk thing. I would love that to be the case for me.

  • I wonder if the guidelines have changed. I was diagnosed in 2005 and saw an endo at my local hospital within 10 days, although I was started on carbimazole and beta blockers immediately by my GP. I assume you already have medication, so as long as you are responding well, I suppose the 12 weeks wait is not too desperate. Is your GP good? Mine pretty much did as I asked and if I felt ill and wanted a blood test to see what was going on, they did it and then liaised with the hospital re changing the dose. To be honest the endo I eventually saw privately was so useless, it was a waste of time but I think I was just unlucky there. Do hope you get an appointment soon. If you are feeling very bad, why not ring the hospital and sweetly chase them up. Might work. xx

  • Thank you for your reply....my GP had put me on Half Inderal which is Proranolol as I went complaining of anxiety and racing heart she also got nurse to do my bloods and that was when it was discovered I was hyper so she said just to continue with the half Inderal and she would refer me to an endo....now the wait. It transpires that my GP's husband is Professor Graham Leese and he is on the committee of the British Thyroid foundation and is an Endo at the hospital I am being referred to but not getting any favours by the looks of things :) I did wonder why I was not given carbimazole from her as Ive read on here other patients getting it from their GP's. I really wonder if I am hypo and not hyper as I'm not full of energy, I'm tired but cant sleep at night!! Ive put weight on since taking beta blocker and I've now started to ache all over! I did phone the hospital last week and asked where I was on their waiting list and was told the way things were going It would take 10-12wks for me to get an appointment unless my GP felt I needed to be seen sooner. I will need more Inderal in 3 weeks so Ill see what happens when I contact my surgery for that. Are you well now? x

  • Hi, I am a bit confused about your care so far. Why are you not on carbimazole? Do you know your blood test results? If not I suggest you ring your surgery tomorrow and obtain them and post here. If you are hyperactive you need something to calm your thyroid, not just something to calm your heart, which will happen automatically when your thyroid is under control. Your GP sees to know little but you cannot wait 10 to 12 weeks if you feel unwell, when all the time damage is being done to your body. As soon as you post results, we shall have an idea how urgent your case is but I was under the impression that all hyperactivity takes priority over people already being treated.

  • I did ask my GP fro my results the last time I saw her I'll copy them word for word. Free thyroxine 20.4 pmol/l (9.8 - 18.8) TSH <0.01 mmol/l (0.4 - 4.0) T3 8.7 pmol/l (3.3 6..1) Not sure if some of these letters are meant to be numbers eg PMOL/L or PMOL1/1. This means nothing to me but having seen other peoples T3 etc results on here mine seemed low!!

  • Well I think I can probably put this into perspective for you and stop you worrying too much. My T4 at diagnosis was 69.7 and TSH non existent. I do not know my T3 but with the T4 at that level, it was also probably very high. So now we know why they are not rushing to see you! Nevertheless both are a little over range for you, so questions need to be asked. Hope you see someone soon. x

  • Thank you sooooooo much for that. As I said reading other peoples results mine seemed low. x

  • kel, after studying my own thyroid condition and being treated with hormone for about 20 years, I think we've been wrong about a lot of it. I hope your friend will watch Dr. Clark's explanation about Hashimoto which is probably 95% of all people with thyroid problems.

    It is a series of short talks.

  • I have hormonal imblances that were triggered after the birth of my last baby ( years ago) Which sent my periods into chaos. I was put on various birth pills and treatment which didnt work, if anything I became very unstable and extremely violen t(reaction to deprovera).

    I chose a hysterectomy as I was in living hell and had my family. The Gynae found I had endrometis (spellings off sorry) in my womb and it was mishapen. I felt FANTASTIC for 6 months and WHAM was rushed into hosptial with left sided pain, vomiting, motion sickness and was passing out because of the pain. I hd a left sided ovarian cyst. This was drained and BINGo back tohappy self. 6 motns later back in again, same thing. So it repeated.

    Then had what I assumed ovary removal and thought I was finally free. Nope, turned out the Gynae hadnt and the cysts were back and in avengence. This is still my life. The cysts pop and grown back immedietly. I have not had a menopause and my ovarian function test show levels indictive of fully functioniing normal ovaries. I have had loads of surgery but now cannot as my bowel has stuck to everything and anything so there is no way into my abdomen. Still the cysts continue. Biggest 1 - 700 cms at the front horizontal and vertical was not known as organs inthe way. They took out 10 litres of pus and blood from it. Smallest is 6cms. Always dark coloured. I had alive aspiration (awake) and they drained from an 12 cm 2 litres and watched as the needle was removed that the cyst refilled. Still going on dear old Fed, (my Cysts) still plague me..

    I had one attempt at shutting the ovaries off, now embedded into the bowel, it jsut began to work and the idiot Dr, stopped saying it worked I was cured and in menopause. He did this without any blood tests. My GP ran them and sent a rather good snotty letter saying he was wrong and my ovarian function had resumed to its normal state. No menopause at all and accompanying ti 5 ovarian cysts and a very snarly me. I'm just about to restart the process care of another DR who took one look at the other Drs notes and said, useless man, you need blood test to show if its working not guess work.

    To your friend, ask her GP to run a full blood check including all hormones, oestrogen/estrogen. progesterone, testostrogen etc, a menopause, all iron b vitamins, d vitamins and thyroid test. If the thyroid comes back in normal, ask for ranges. Just because the book guidelines says TSH is prefect at 5, does not mean its her idea. We are all different and are bodies act differently, something many Drs forget and think the book guidelines apply to all. One size does not fit all.

    Also ask the GP to give her an ultrasound test of the entire abdominal area, including kidney, liver, womb, ovaries and bladder, looking for abnormalites, cysts, etc.. If the scan shows say, ovarian/ womb problems to then refer her to see a gynae.

    Your friend could be going through the menopause just as well as thyroid. As the menopause shows the same symptons as ovarian cysts.polycystic syndrome,Addisons, Cushings, Diabetes and thyroid. Its the key test that shows what is at fault. Menopause being the hormonal decreases, ushing = cortisol, Diabetes = insulin, Addisons = Potassium, thyroid being the TSH FT4/FT3.

    Equally vit D and iron issues can also mimic what shes going through. A full blood test would at least rule out what it isnt.

    Edited to add.

    My daughter started having the same hormonal imblances that matched mine, when they first went out of control. Her Dr ran the thyroid test and turned out her thyroid was low but in range and she was given levo. So fingers crossed she doesnt develop what I went through when nobody had realised my thyroid was low and was missed for many years. Which if it had been picked up may have saved me from numerous unsuccessful surgeries.

  • No advice, just support - I am at a similar stage to your friend and also asking for the full battery of tests.

    Wishing you luck and sending hugs

  • Thanks all! I really appreciate your suggestions, advice and luck! I shall let you know what happens on friday. I will say it has really helped my friend just to know she is not alone, but it makes her sad that so many are suffering like she is! Thanks again.

  • Hi! I can sympathise so much with your friend as I am in a similar situation to her with all the hyper symptons and family history of thyroid but having been diagnosed with ME 8 years ago always had that label! Am fighting for further tests like she is but now had to change gp again! She is very lucky to have you as support and be a voice for her, wish you all the best and hope you succeed. With my fiance help and support I will get there. Keep us updated

  • What a good friend you are! I had all those symptoms before a diagnosis of Graves disease.

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