Big Thank You to Addenbrookes Hospital and this Forum

[Chicken12]

I cant thank Addenbrookes hospital or this Forum enough THANK YOU!

I have not posted on here for ages, I wanted to see if my good health remained I did not want to jinx things. Reading other people's posts and questions brings it all back how dreadful I felt for 5 years and how I struggled to get the correct help, very ignorant GPs who took the "wait and see" approach because I was borderline underactive, as I got sicker and sicker ending up practically bedridden and being offered "anti depressants" which I refused. Referral to an Endo, and pinning so much hope on the appointments, and getting absolutely nowhere, on thyroxine, off thyroxine, a gut feeling that he did not know what he was talking about and he didn't. I found out from this Forum that I could ask for a referral to a hospital of my choice, and I begged my GP to send me to Addenbrookes. My logic was get to a big university hospital, larger patient base, just might have a bit more expertise than the local hospital. I am so glad I did.

Diagnosed Hashimos, nodule on thyroid that thankfully was removed and was benign! Diagnosed underactive thyroid that I had been told was "borderline". Fabulous Endos, who listened patiently to my symptoms, the forgetfulness, driving and forgetting where I was going, that caused me to have "panics", baked potatoes put in the aga and forgotten about, size of stones when discovered days later, the mood swings, screaming at everybody like a lunatic, the sense of being overwhelmed by everything, a parents evening at my children's school, walking the dog, absolutely no energy whatsoever, if I walked anywhere I felt as if I was walking in quicksand, out of breath constantly, massive big sleeps at night and waking up as tired as I had been the night before, on the school run, counting the minutes until I could get back into bed, the weight gain, stones piling on and the dress sizes going up and up, the aching limbs, always being cold and then hair falling out. My silly hairdresser pulling handfuls of hair out of the sink when she washed my hair and tutting. One of my lowest points. I have since changed hairdressers. I remember thinking this is it, this is my life now. I am just functioning and no more.

Referral to Endos at Addenbrookes who patiently listened, told me this will not be a quick fix, it takes time to take medication, monitor levels, increase, decrease medication, have to get levels right for you. They eventually gave me T3 that helped me so much immediately. 18 months I have been attending Addenbrookes, and I am back to how I felt before my thyroid nightmare. I just feel normal and I never ever thought I would say that. Addenbrookes are so knowledgeable about this condition. They understand about Vitamin D, B Vitamins, iron levels and how important these vitamins are to optimum health, how they affect the thyroid, and I think more importantly they tend to go on how you actually feel, the blood tests are considered but its how you are feeling. They really do make you feel like an individual, and not the factory conveyor belt you can feel you are on when attending some NHS hopsitals.

Hair is growing back I was told it would when levels were correct and I have lost weight. I have dropped 3 dress sizes! I have not dieted, I eat only once a day. I might eat at lunchtime, or it might be in the evening but I have one meal a day with dessert if I feel like it, with bread if I want it. The weight has slowly came off. Been doing this since October.

Off to Barbados next week for 2 weeks. Life is good again.

[ButterflyActive]

I am so happy for you pet. It is so so hard getting through life feeling like this. I got my thyroid removed in Feb and I still feel bad. I havdm these spasms in my jaw, that are so annyoying painful at times, and creates anxiety when my breathing is all over the place. Im moody, emotional and going around everyday like a zombie. My reflux is all over the place. Headaches and migraines, periods are painful and im like a witch when I get them. Im loosing weight. Hungrey all the time. Im taking 150mg eltroxine since April and my levels are 5:4 TSH T4 24:2 and T3 is 4:3 TPO is 20.

I hope the endo can do something on wed. Im so happy for u again pet, I hope one day I can feel normal again or ME again. X

[Chicken12 in reply to ButterflyActive]

Hi ButterflyActive

Hopefully your Endo will be knowledgeable and sympathetic and you get the help you deserve. Tell the endo all of your symptoms and say this is not you. You don't feel right. Good luck x

[Clutter in reply to ButterflyActive]

ButterflyActive, can you post your results with the lab ref ranges (the figures in brackets after your results) in a new question.

[ButterflyActive in reply to Clutter]

Hi

Will do. And post them in a new question 😊

[Polina44]

Hi... What brilliant news!!!! So pleased you are doing so well in fact fantastic by the sound of things 😀 Gives everyone else hope too! Have super holiday 🌴 L x

[Chicken12 in reply to Polina44]

x

[lucylocks]

Thanks for posting,

it is always nice to read a success story.

Do you mind me asking how much T3 you take?

Best wishes browny

[Chicken12 in reply to lucylocks]

I started off on half a T3 tablet twice a day for two weeks. I felt so much better almost immediately. Then I increased to two pills twice a day. I could feel the affects of the pills wearing off and when I felt tired again I would take another pill. I have taken 4 pills a day in the early days, but my levels were really low, and then I took 3 pills for ages and since Christmas I have reduced to 2 pills a day. I think as the weight has dropped off, I have needed less.

Heart palpitations are what you have to watch out for. If you have heart palpitations stop for a day or two and then restart or reduce your dose by a pill.

Addenbrookes are very much we recommend this dose, you listen to your body, you know how you feel, and if you don't feel right reduce or increase. I dont think that you can stay on the same set dose all the time. If you have a stressful period in your life, or you are really busy, you have a lot going on and your sleep has been reduced, you need to increase your dose for a day or two, I just go with how I feel.

[lucylocks in reply to Chicken12]

Many thanks for replying it is really helpful.

Enjoy your holiday.

Best wishes.

[Clutter]

Chicken12, I'm so glad you're feeling well now. Thanks for posting, positive stories are very encouraging for those who are newly diagnosed and those who are still struggling.

[Chicken12 in reply to Clutter]

Thank you.

[Fruitandnutcase]

That is absolutely fantastic news. I've been thinking about you recently and wondering how you were - now I know.

Are you still getting your T3 without problems? Last time I heard from you your doctor wasn't keen on prescribing it.

It's going to be a great holiday - imagine being three stones lighter and with all that extra energy not to mention being 'with it'. 😎

[Chicken12 in reply to Fruitandnutcase]

We shall have to meet up after the holiday. You were so helpful to me when I was low as were so many others Marz, Grey Goose, to name a few.

I have not had to visit my GP for almost 18 months, they renewed the T3 prescription recently via receptionist for another 6 applications. Addenbrookes do all the blood testing etc. I am still under their care for the thyroid. I think I will be getting discharged from Addenbrookes soon but I will have to cross any bridges with my GP.

I was never at the GPs before I had thyroid trouble. What really annoyed me was that I had been fobbed off for over 3 years going backwards and forwards maybe twice a year with the same complaint, maybe being lucky and granted a blood test, being told its borderline lets wait and see, and then back a year later same complaint, symptoms gradually worsening, fobbed off with its your age, its your mental health! Willing to get me on anti depressants. When I do finally get the correct treatment my GP telephones to tell me there was a cost implication to the T3 prescription. I could not believe what I was hearing. Did I know how much it was costing he asked me? The same GP who had been so sweet and kind during my pregnancies, had googled and cooed over my babies when they were born.

This has all been such a learning curve. I am older and wiser. I am knowledgeable about my condition, but I am also much wiser about how my GP practice operates, and its not the health of the poor patient that they are concerned with its funding that drives my practice.

[Fruitandnutcase in reply to Chicken12]

It's interesting how you wiser up after an experience like you've (and an awful lot of others ) have had. You go to your GP full of trust and with the expectation that you will be made well. The last thing you expect is to have to research your condition then to have to fight for the appropriate treatment. Thank heavens for TUK!

I bet a lot of practices are fund driven. We were out for a meal with a guy who is a surgeon and I mentioned that I wasn't greatly pleased about the GPs response to my husband on a recent visit, especially as he, like you never goes to the doctor. Our friend looked at me and said 'did I think the doctor's response or lack of it was for financial reasons'.

Yes, definitely, once you are back we must meet up for a coffee. I'll be looking for a cheerful smiley person with a fabulous sun tan. 😀

[Chicken12 in reply to Fruitandnutcase]

x

[Barrister]

I'm so pleased for you. Enjoy your holiday. Clemmie

[Naomi8]

So encouraging to read a "good news" post.I have been adding T3 to my T4 for only 3 weeks & your post is helpful to remind me its early days-especially re hair & weight!

This forum is a godsend & I am so grateful to its members & the true dedication of its administrators.

I have been on T4 only for 17 years & my health has been declining for a long time.

Thanks to the knowledge & experience of the people on this forum I hope I am on the road to a better quality of life too.So far so good!

[Chicken12 in reply to Naomi8]

Its such a good forum for informing you about your condition but what I found a godsend was there was always someone there who would listen to you, and when I felt really down they would post a reassuring message that boosted you again.

I found that I was undermedicated on T4 by my GP and by a previous Endo. My GP and Endo would not have it that I was undermedicated. I felt better when I was taken off T4 for a period than when I was on it.

The good Endo told me that if I had heart palpitations I was to stop taking T3 immediately. Then reintroduce it after a few days. I started off on half a pill twice a day for 2 weeks and then increased to two pills twice a day. At one point I was taking three pills a day. Last pill to be taken by 4pm or else no sleep.

Good luck. Once levels are okay your hair will grow back.

[SlowDragon Administrator]

Can you PM me the name of your consultant.

I am thinking of asking for endo referral for second opinion for my son

As I know from my own experience, many endo's in local hospitals seem to just deal wth diabetes and are at a loss when presented with complex thyroid problem

[Chicken12 in reply to SlowDragon]

What I found is that thyroid problems that are presented as complex at local hospitals and have everyone dumbfounded as to how to treat, are not viewed like that at larger hospitals because of the larger patient base they have seen all the problems before.

At my previous local hospital the Endo I saw was an expert on diabetes but lacked knowledge of the thyroid.

Addenbrookes has a childrens thyroid clinic. My daughter's friend had thyroid cancer, and I told her mum without a doubt get to Addenbrookes. She had thyroid removed and no probs at all with dosing. She is fit and healthy now.

[Fruitandnutcase in reply to Chicken12]

I've not long recommended our favourite consultant to another depressed and desperate user of this site and she is SO pleased with her.

[Beverleyb]

Hi Chicken12, So pleased to read you had great treatment at Addenbrookes . This is the first time ive heard of anyone seeing an endo there. I think I will ask my GP to refer me to the clinic, I live about 30 miles from Addenbrookes. Thank you, you have given me hope, have a great holiday! Bev.

[Beverleyb]

would you mind sending me a pm of the endo at Addenbrookes please? many thanks Bev.

[Chicken12 in reply to Beverleyb]

You don't see a particular endo at Addenbrookes. Its a training hospital so you see trainees who are attending Cambridge University and wish to go into the medical profession. They have a few years training under their belt by the time they get to the diabetes and thyroid clinic. You may see different trainees each time. I was lucky, I have only seen two.

The Endocrinologist oversees the patients. You are introduced to the Endocrinologist initially and then she goes to her office and she has her students, who will do the patient consultation. They ask the questions, they write the notes and then they go to the Endo in her office and she listens to what they say and the treatment they suggest and she says whether she agrees or not. The trainees are monitored very carefully.

I think the standard of service you get from trainees can be better than what you get from qualified doctors who have become staid and complacent in their jobs.

[Beverleyb in reply to Chicken12]

Thank you Chicken12! No doubt you will be inundated with questions as usual when someone finds a good endo.

I agree with you about trainees, I would imagine they are very thorough.

Watch out Addenbrookes, Thyroiduk is coming!!!

thank you very much! Bev.

[trucall]

PM me too, I have a refferal for addenbrookes endo but don't know which consultant yet if i can influence the choice it would be great to know one who is highly recommended after 20 year hypo and inadequate/no treatment whatsoever in the north west.

[Chicken12 in reply to trucall]

Its trainees that you see with a qualified Endocrinologist overseeing the treatment plan. In my experience, trainees can be keen to offer a good service, and I have found them to be far more sympathetic and knowledgeable than consultants who have been in the job years and years and are set in their ways.

The first trainee I saw told me this will not be a quick fix solution to your problem it takes time to administer tests, medication and check results etc and it does.

[Sandra600]

Could you please pm me the name of the endo you saw? I am glad you are feeling so much better, thanks in advance, Sandra.

[Chicken12 in reply to Sandra600]

its the Thyroid/Endocrine Clinic and you see a consultant or a member of their team

[Sandra600 in reply to Chicken12]

Ok thanks.

[lolajone]

Thanks for posting it's encouraging to hear that somebody has had improvement wishing you a fab holiday

[Chicken12]

x