Years ago you were locked up in the madhouse if you suffered Hypothyroidism..have things really changed ??!!!!

I'm posting again as I feel so cross,, I posted few days ago about my sister who is suffering with low thyroid low ferritin symptoms ,, heart irregularities ,extreme tiredness ,cold ....and she has been trying to raise ferritin levels for 6 months as at bottom of range ... Went to the Dr and asked that her Free t4 T3 could be tested this time , she has never had it done in last 10 years or more Dr said tests not necessary only TSH and that NHS won't fund them he told her her symptoms were probably anxiety and she should have cognitive behaviour therapy !!!!! she has been treated if you can call it that for the last 20 plus years with Throxine . Why ?? . I am so amazed that they are still trying to convince us that we are mad ..... the Dr said as she was leaving that yes he would look at some of the info of of this site and he would try and talk round the biologist but he was not an amenable chap and if TSH within range (I presume up to 10!!) that would not refer to Endo as he tried with some other poor soul.....I am at a loss Drs are just puppets .. I'm sure you have heard all this before but was amazed !!! she will of course have private tests and look for a sympathetic knowledgable GP in. The Swindon area ,,,would be grateful for info if anyone knows of One ...Thanks again sorry for rant ...Val

35 Replies

  • I had a quick look at your earlier post and see that your sister eats very little meat? I imagine her Vitamin B12 levels are probably rather low too - that alone would make her feel terrible.

    If her ferritin is in her boots she won't be converting t4 to t3 very well. I rather think that when her dose was reduced it should probably have been increased.

    When you get her results, post them here. It would be really helpful to have T3, but the other results will tell us quite a bit.

    Sorry I don't know any docs in Swindon but hopefully someone will x

  • Thankyou yes will get private tests and post ,,, Regards Val

  • I have been offered the same - a referral to a rehabilitation Dr for CBT. I am not depressed but you could so easily be if the treatment received by the NHS doesn't kill you off first by the time they have ridiculed, dismissed, been rude & abusive, condescending... You get the idea.

    So sorry about your sister and wish you luck and temerity to keep going until she can find someone to help her.

  • thanks for your reply ,,it all seems so silly why do they just not get it !!, I suppose GPs just scratch the surface on a lot of illnesses ! You have to fight for yourself on this one ...but so hard when you are feeling tired out !!

  • Yes it really is hard. I have felt so ill I've just walked out and then thought of all the things I wanted to say - and some not so polite!

    I had followed all the good advice offered here and my head is beginning to clear at least so feel like I can take on the fight a bit and today got good new I have been taken on by another thyroid surgeon as the last was the most arrogant SOB living. I see him Wednesday and maybe someone will see fit to tell me my core biopsy results.

    Good luck and keep going.

  • Time all these NHS labs were FORCED to readup about CENTRAL/2ndary Hypothyroid

    TSH is utterly meaningless when hypothyroid is caused by Pituarity failure because TSH will be low but so will T4 and T3

  • Hi It happened to me for 6 months!


  • My GP referred me to the local psychiatric hospital where I was 'assessed' by different therapists and nurses who all asked why I was so obssessed with my physical health when I was obviously mentally ill!! Since being diagnosed with fibromyalgia I have been sent on a long and pointless CBT course to help me 'learn to live with my ill health'.

    Sorry I can't help with good GP suggestions, I have never seen one in 45 years, not that I am cynical of the NHS you understand. There is a list that thyroid UK provide of decent doctors that you can request by email.

    I paid for private tests with blue horizon and started to self treat with NDT.

    I'm sure the private tests along with this forum will help your sister, she's lucky to have you fighting her corner. Good luck.

  • Oh dear that is all so bad , are you a lot better now ? Yes it's obvious that the NHS is crumbling and can't cope , you have to take it on your self as you rightly said ... We are ordering Blue Horizon tests today , they are very quick .X

  • I've noticed some tiny improvements thank you, I only started NDT at the beginning of December so am on a very low dose.

    Ask for a print out and check all your sister's blood results as GPs call anything 'within normal range' even if it's way below optimal.

    Blue Horizon are very quick, the nurse at my GP took the blood for me as she is in agreement regarding the NHS.

  • To answer your question ... Nope, things haven't changed. We are all nuts according to the GPs. Well, that's how they make me feel lol

    "Oh, you have anxiety/panic attacks and you are depressed and you are constantly tired??? Here, pop some pills. No need to check what might be causing this. It can't be your Thyroid. Your TSH is within the range." Lol

  • yes your right ,it's sooooo wrong !!!

  • lol Soo true, 'have you considered antidepressants for your health anxiety' was the response when I took in a print out from TUK of all my symptoms. Obviously I shouldn't be worrying about the fact I feel like death and might as well be!

  • Hello Val-55,

    For a moment there I thought you'd been looking at my medical doc's!!!!!!!

    Exactly the same senario as I have had with my doctor, keep at it though for your sister, I am now trying a different tack and will keep banging on until I get what I want.

    I thought doctors were intelligent people, I'm begining to wonder!!


  • It is fairly wide spread it seems ,, if they did simple blood tests more readily it would save such a lot on wasted alternative treatments ,Drs ,Drugs heartache argh ...I always thoroughly research anything I think might be wrong before I go now , because you seem to come away with a Google print out from Dr any way !!!

  • I am sincerely sorry your sister has suffered and it is unnecessary but we do need to be able to say what we want to be treated with, or given a trial. This is some 'light reading' for your GP. We are at the mercy of the rotten guidelines leading to years of unnecessary illhealth when levo doesn't suit us.

    Unfortunately, it is because the medical profession are not trained as medical students (pre-blood tests) to detect by clinical symptoms and their reliance on a computer instead of the patient.

  • Hello Val, I am in Swindon too and my TSH is at 9.4 and it's still not high enough for them to help me. I have just had another blood test in the hope that i am over the edge now as i'm running out of hair and i cannot stop shaking not to mention everything else i am suffering from.

    I am with the North Swindon Practice and when i go to pick up my results this time i will be going to see a different doctor to the 2 i have seen before.

    Victoria x

  • That is so wrong , you obviously need treatment as really fed up has said ... what is the matter with these Drs .?!!!

  • Do you go first thing in the morning when the levels are highest? I would have thought by now that GPs have moved on from this and look at 5+ rather than 10+, certainly by 9+ you are in trouble!

  • I did this time, I was there for 7.30am. I don't normally get up until 8.30 because of all the medication I'm on - I was a total zombie!

  • You should list all your symptoms, here is a tick list to help you along:

    Hopefully they will take you more seriously with this info.

    Alternatively, self-medicate with NDT, which suppresses TSH, of which reading causes GP to panic and refer you to endo.

  • Thank you that's really helpful, i have an appointment on Tuesday to find out the results so i will take it with me then.

  • You're welcome, best of luck.

  • My TSH was 8.something and they refused to treat me. Told me to come back in 6 months for another blood test lol Nah, not happening. Told my GP that I want antibodies checked. She was reluctant and wanted to prescribe antidepressant etc. Told her I want antobodies checked first to exclude my thyroid as the culprit lol She eventually agreed to test antibodies which were high. She then prescribed levo.

    Victoria, please have your antibodies checked. All the best

  • What were your antibody levels of you don't mind me asking? I really do empathise with those high TSH levels ladies that's barbaric to leave untreated.

    I keep reading of folks who have in range TSH but when drs find antibodies they get the levo. My antibodies were 221 last count but I am fine and my body has to work hard as long as possible apparently.

  • Can't remember the exact number but they were high, 800 or so.

  • Hi Lily_Munster, thanks for your message it's really helpful. I will do my best to push for them to test my antibodies this time xx

  • I do hope they will do an antibodies test. I know how frustrating it can be to go to the GP only to be told that you are fine even though you feel awful. All the best

  • A TSH of over 5 MUST be treated if you have thyroid antibodies

    Have they tested for them ?

    what are your free T4 and Free t3 results




    all of them should be tested and the latter 3 MUST be over halfway in their ranges or your body cannot even utilise the levothyroxine they should eventually prescribe

  • The T4 they did test because the TSH was over their range that is up to 6.9 and that was 15.

    They didn't test anything else, and the first doctor who gave me the results and told me they were borderline suggested i had a low mood so maybe i should think about some anti depressants! That didn't go down to well with me but i knew i wasn't going to get anywhere with him so i left.

    I went back a week later and saw the doctor that ordered the test in the first place and i told her what i thought about the other doctor and that i want it recorded on my record that i wasn't suffering from a low mood at all. I have endometriosis and as a result suffer with chronic pain and i work very hard on it not getting me down. Also I have recently been assessed at the pain clinic and i score very low on their psychological mood tests. Just to enforce my point i took all the letters to prove my point even though i know they should have them on file.

    I know that an under-active thyroid can cause depression but i wasn't going to have that doctor (who said everything with a smile on his face) labelling me as depressed rather than suffering from an under active thyroid.

    I really thought that my fight with doctors and consultants was over once i was diagnosed with endometriosis; it can take between 7-9 years to get diagnosed once you really start fighting the doctors when you suffer with that, but i guess i'm just at the start of another one?!


  • Isn't endometriosis a symptom of undiagnosed thyroid problems? Or can be? I'm sure I read it somewhere. I had fibroids and I know they were part of the thyroid problem.

  • •Polycystic ovaries can be caused by an under-active thyroid i believe. I do have those too. Which is strange as you normally find them in overweight women and i'm only a size 10, but i have had those for years so i'm not sure they would accept that there is a link there in my case.

  • I guess because they are both hormone related it's possible, but might muddy the waters. Fingers crossed you get treatment soon.

  • Endometriosis is also autoimmune and very very typical in hypo /hashi patients

    my Daughter and one of her 3 daughters has severe endo from age 16

    and severe hashis

    my Husband had graves then Hashis

    his Mother had severe Endo from age 16

    notyhing has been nullified by my good genes

  • Well that's bill as I've had ferreting tested in the last year. Totally necessary!!! Change doctors!!

You may also like...