I've read a lot of stories but just seem to have found negative experiences. Has anyone with under active thyroid had successful treatment?

I have only come across problems with medication, unsupportive GP's and a lot of unhappy and unwell people on this website. I am dreading asking for a referral because there seems to be a lot of visits to endocrinologists happening yet these doctors will not treat if blood tests are 'normal' and I get the impression NHS guidelines say there shouldn't be further treatment if blood works are considered fine. I know I'm self-diagnosing at this point, but all of the signs and symptoms are there, as I described in my last question and as other avenues have drawn a blank I guess I'm looking for other answers and hope this is the final piece of the puzzle. I want to believe there is help available and caring doctors out there, so would appreciate pointers towards more positive posts and experiences. Many thanks for reading.

22 Replies

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  • Thyroid UK have recently opened a new section of Case Studies:

    thyroiduk.org.uk/tuk/get_in...

    This does NOT mean the existing case studies do not have any successes - but they were posted before this section was created.

    I rather regard myself as a success - usually feeling pretty good on levothyroxine.

    There is a very strong tendency for people who really start to feel better to disappear and only return if they need to. Maybe never! And to a significant extent only people who have problems ever even look for support sites.

    Even those who have not yet achieved 100% recovery very often have had significant improvement through the support they have received.

    Rod

  • Hi there Rod and thank you for taking the time out to reply to me. I read the case and it could be my story. My electric blanket failed and I was distraught - nobody could understand why I couldn't settle until I got a new one! The coldness is ridiculous.

    I am really annoyed at the part about not being able to have drugs prescribed if the advice comes from a private doctor, I'll ask my GP about the practice viewpoints if I have to go down the private route.

    I am still learning the glossary and terms you old hands use so expertly, to present my case when I go to surgery. I want to sound as if I know what I'm talking about so do appreciate the site advice. I am glad you are feeling well! I can't wait to join you :-)

  • Rod is right that there are other success stories in other categories. Mine is a success in progress. Great improvements but not quite there yet. You can read it here if you wish

    thyroiduk.org.uk/tuk/get_in...

    There have been further improvements since I wrote that two months ago. I now have a normal, and mostly regular, heart rate. I'm also doing more and enjoying life a lot.

    Carolyn x

  • Thanks for sharing your story with me Carolyn. I will study some of the medication you have mentioned to familiarise myself with it. Hope you are feeling well at the moment. Take care :-) x

  • .....as you are looking for answers yourself it is quite possible you are drawn to posts of people doing the same ! It is not a reality that you can read all the posts - which may include the good news.

    Following advice on this forum I have been able to fine tune things and improve. Then you have a down day and its back to searching for a bit more. Thyroid illness can ebb and flow - as do the people on this site.

    Hope you find a good Endocrinologist - and not one that specialises in Diabetes - to guide you through the maze ! Wishing you well soon........

    I think the secret to successful treatment is to read, read and read and to learn from others.

  • I am reading avidly I need to absorb the right sort of information - the best news is that my own doctor is unavailable for my appointment and I get to meet a relative stranger to the practice. Is this a good or bad thing, I wonder! How do I discover if the endocrinologist has an interest in thyroid problems? Is there some sort of list. I know under current NHS regs you can request which hospital you are treated at. Many thanks.

  • Hi Susie, I was diagnosed hypo (Hashimotos) almost 18 years ago. The first 5 years or so were challenging as I both learned more about my condition and consequently began challenging my gp and endo to treat me in accordance with my symptom. I have now had 10 years plus of reasonably good treatment - now 100mg T4 plus 30/40mg T3 and currently feel fairly well. I would have achieved this state of health in less than 5 years if I had the info then that I have now so there is hope for most people with this condition! This website is extremely informative and in particular has some very good advice on how to help your GP/Endo understand the condition, tests and treatment

  • A training group sounds like a brilliant idea - or an adopt a patient - where we take a fellow sufferer along to the consultation to prompt us to ask the 'right' questions! I am currently reading about medications now. I hope you continue to feel well and thank you for encouraging me to really use the site to my advantage. Take care :-)

  • Sorry I hit the button before I finished. As an experienced trainer it is my view that the best people to train on a condition are the people who have direct experience of managing their lives with it - perhaps we should form a training group?

  • Hi Susie, I was diagnosed hypo (hashimotos) in dec 2011 but the GP said you are boarder line came back in 6 months - I didn't know at the time but bu obtaining copies of blood test my tsh was below 10 but t4 was out of range, positive antibodies. Thankfully my husband came with me and insisted he give me treatment, reluctantly I was given 25mcg. After that I saw different gps at the same reactive and all were more sympathetic and eventually I found my GP that has gradually increased my dose despite my tsh being in range. He said that tsh bears no relevance when on thyroxine and has been happy to increase my meds, I'm now on 125mcg.

    There are good gps out there but it's just a matter of finding them, it's hard wrk but well worth it.

    Good luck.

  • This was interesting to read because basically my husband is fed up of me not being 'me' and is coming to the consultation as he is fed up of me being passed from pillar to post in the orthopaedic/rheumatology department. He says it doesn't take an expert to see I have sore joints! He wants to know why I have all of these symptoms, not given painkillers, rsi supports and shoe inserts! . So I think he will be good support. I hope you have continuing good health. Thank you for taking the time to reply.

  • I think I can regard myself as a success. The reason I am though is because of my education from this site which made me able to talk to my doctor ( I changed surgeries when I got no help) I now have a doctor who listens to me and doesn't treat me like a number on a blood test form, now the only way is up! You can't get better if you are with a doctor who doesn't listen. There are so many of them about. I call them "god doctors" and their word is law, even though they don't know what they are talking about.

    Educate yourself in any way you can, this site, many many books on the subject. Once you have that under your belt you have a greater chance of getting the right treatment.

    We shouldn't have to do that but that's just the way it is.

    You will be very lucky to just walk into a surgery and get the right treatment without a bit of a fight. Miracles do happen though so good luck!

  • When one uses the word success it usually brings to mind an end to something or reaching a peak. I had a partial thyroidectomy in 1967, problems afterwards due to ignorance on my part as well as my Doctors in that I received no medication until 1995 for under-active thyroid. I was placed on thyroxine at that point and have felt reasonably well since then. My problems tend to be if I find myself in a stressful situation my adrenals start to sink, this is common whether you have a thyroid condition or not, I also have problems with my joints and fibromyalgia which may well be linked to my thyroid.

    Although I have these latter problems I do not feel unwell and that is the most important thing to me and from that point of view I would say my treatment is successful. I am aware that many on this website feel very poorly but I don't.

    As pointed out above, life is full of ebbs and flows which affect us all in one way or another, something may happen that knocks our thyroid out of sync for a while but then we bounce back, it is not cut and dried but neither is the flow of life.

    We can only deal with life as it is "in the moment", giving birth or the ageing process can all affect how the thyroid behaves but this does not mean that we will always be poorly. Again like many others here, I tackle my health from many directions, healthy diet, Mindfulness practice, avoiding stress or stressy people as much as possible, generally doing the best you can which includes chasing the best medication for yourself to obtain homeostasis. It is a work in progress.

    Today my back is hurting as I type this but I feel well and say to myself: breathe smile I am alive....

    Hope this helps

    Kind regards

    Joyia

  • I thought I might be suffering from fibromyalgia and didn't think the reason I had that would be because of thyroid problems - but it makes sense. Things like this have to have an underlying cause. I'm not ill all of the time but the tiredness is with me whatever task I undertake. I have to concentrate and give myself targets continuously or I would just sit around all day. Even pleasurable pursuits like sitting knitting or drawing seem to take such an effort to get started. I don't know why as I'm usually such an enthusiastic 'doer'. I don't understand anything about the adrenals so will look this up next. Thank you so much for your very helpful insight to living with something that can suck the pleasure out of life. Take care :-)

  • Thank you for replying and I was interested to read of your experience. I think because I have already been given the run around with my various symptoms and non of them have been helped I'm in a good position to insist on different avenues being explored. It depends if the 'god doctors' are having a good hair day perhaps? Keep your fingers crossed for me and that miracle!

  • You will not get the best treatment on NHS for thyroid. See a private doctor like dr Peatfield.

  • That's another negative then. Thanks for replying.

  • I take much higher dose than the blood tests tell me I should take , my GP and Endo threat to refuse prescribe me the dosage so I will buy it myself if necessary. The higher dosage is definately helping i am not 100 percent but still feeling much better

    Sharon

  • Thanks for sharing, Sharon. I have to see how evrything goes before (if) I get to the medication stage. Personally I'm a bit wary of increasing dosages so this is a tricky one for me!

  • Hi Susie

    I just want to say that not everyone is having negative treatment on them by the NHS. I am certainly not and my mother has been on Levothyroxine since she was 28 and she is now 75!. I am very lucky my GP is not one who just treats numbers, he treats the patient.

  • Hi Susie

    I was one of those lucky ones who walked into the surgery and got the right treatment.

    I was given levo and was fine for approx. 15 years. It is only in the last couple of years that things have got trickier, and I am now supplementing with extra vitamins. But I am getting older so I expect some wear and tear!

    I wish you luck.

  • Hi Susi - I am fortunate to be able to say that my treatment on 50 levo. is successful. I also take 1 each of D3, Nutri Adrenal, Nutri Thyroid, and Nutri. Thyro. Complex also drink weak tea and coffee and lots of herbal teas. I try not to over-exert myself physically or mentally as I know that doesn't do me any good but I lead an extremely busy and active life but I try to keep my energies balanced with meditation and yoga. I am under a lot of stress at the moment due to ill-health in the family but am lucky to have the support of good family and friends. I was diagnosed with a TSH of 8 two years ago and my dr. allows me to adjust my dose depending on how I feel but I never need more that the odd 75 mc. dose. I have read everything I can get hold of and this site is wonderful. Because I feel I understand the condition I really feel I am charge of my health which is very empowering. When I talk to my dr. I get the impression that she listens to me because I seem to have a good understanding of the condition but if this wasn't the situation I would have to look elsewhere. I know I am lucky but I do hope my experiences will help others to find their way through. The main thing I have learnt is to listen to your body and hopefully, put a stop to things before they get worse because the further down you go the more it is difficult climb back up. Just to add I am 69. Hope this helps. Good Luck. Jax

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