3 years since thyroidectomy, need help and someone to talk too! Am only 23

[Star2013]

Bit of a long one really but would really like some help or talk to someone who can relate with my issues.

Basically when I was 17 (now 23) I was diagnosed with an over active thyroid and Graves' disease and ever since my life hasn't been the same.

At 17 having Graves' disease was hell! My eyes pertruded so much and even though now they have gone down massively! They will never be what they used to be.

I struggled for 3 years before they finally remove it after which all my symptoms subsided and I felt like me again for the next year, I thought that it was over and I could get on with my life just having a blood test every 3 months. However a year later I started to loose my hair and had bald patches on my head, I had a blood test and my thyroid levels where no longer normal I was extremely low!

Now for 2 years I have been struggling and the doctors can't seem to get my dosage right. When I am on 100micrograms of thyroxine I am far too low, I loose my hair, I suffer from depression, I am tired and cranky and I'm not me!

When I am on 125micrograms the doctors tell me I am far to high! However I feel like me on this dose! I told my doctor this and refused to go on 100 because I can't deal with depression, she agreed and let me stay on 125.

We have also tried alternating my doses, 100 on one day 125 the next, well I did this for a week and noticed more hair falling out and depression creeping back in so stopped immediately!

I am now on 125 and have asked my doctor to stay on this for at least 6 months to see if it stables its self. Nearly 5 months in I feel fabulous and like me again!!! All my bald patches I had before have new hair in them! However...... Just when I though things where getting better I noticed today I have a new bald patch and what looks like a spot on my eye which is severely blood shot!

I just don't know what to do anymore, are these symptoms telling me my dosage is wrong? It are they unrelated? Do I need to ask my doctor to do other tests to see if anything else is wrong or is it just all related to my thyroid?

I've been strong for the past 5 years and tried to not let it effect my life but this last year has really taken its toll on me and I don't know what to do anymore, any help or just someone to talk to would be great

[soniam]

Hi Star2013

I too had mine removed 5 years ago (thyroid cancer) so can relate to you! Now, like most of us on here, l am not a doctor, but us thyroid sufferers tend to have to find our own way! You really do need to either see your GP or Endo or both for more tests as something is not right. You may have absorption issues with the T4 only, and may need T3 aswell. As far as l am concerned, if something is taken away from your body that makes several hormones, your body is hardly likely to function properly by just replacing the lost part with one hormone! With people like us who have NO thyroid anymore, l really do believe that T4 only really is not sufficient!

Go back to your GP and don't take any nonsense!

Good luck x

[jimjim]

Hello! I am not sure I can be too much help, but did notice you haven't had any responses and know from personal experience that this can make you feel totally miserable! So - hello - please don't be sad that you are unwell, and try and focus on the potential that you WILL feel better eventually!

In response to your actual questions, I would say - do you have your proper results - personally, and printed out for you? I have only recently started ensuring I have them all to read thoroughly and do my own research as it seems sometimes the only way to get anywhere unless you are really lucky with the right doctors! Once you have the figures, post them properly with all the facts on here, and you will find others will make suggestions and comments so that you can go to your doctors armed with decent questions - at least that way they are less likely to fob you off with a 'wait and see' attitude. It is harder still for you being so young, as you should be out living your life to the full! Most of us have probably been told we should 'expect to be suffering menopausal symptoms' anyway, and this is totally normal!

Without any actual figures to look at, I wouldn't have a clue as to your situation, but I would say that you need to demand the FULL RANGE of tests - please type them out and take your request with you - and don't miss any out! By this I mean things like B12, VitD, folic acid and all the rest - I demanded these tests, but only started with demanding a B12 as an extra, which proved to be severely deficient - so had a course of those to boost me - then researched and had to ASK for Vit D - this was also low, so had another course, new tests, this time they added Folic Acid test - which again came back low - all in all it was over 6 months before my levels were better in each of the vitamins/minerals - still fighting now as I don't appear to have had the Iron tested - you would think that would have been first on the list! Also they are very reluctant to do a T3 test specifically, relying only on FT4 & TSH - these do not give a full enough picture.

Anyway - I am sending love and supportive vibes through the net - I would give you a hug and a chat if I could as I know how hard it is feeling totally adrift with nobody to understand your feeling - there are many here who do and you are NOT alone! Good Luck, get your printouts and arm yourself with questions and reasoned argument and you will win!xx

[Star2013]

Thank you so much for your replies!!! I feel so much better already!

Reading through this website and your replies has made me realise how much I need to take control of this myself! Going straight to the doctor tomorrow and demanding more tests, it's not fair how much information GP's hold back from us!

[KennyGee]

I had part of my thyroid removed in 1969 and then RAI treatment 10 years ago and it has taken me a long time to recognise that my GP is not going to be the answer. I fully endorse Soniam's comment above that we have to take control of our own situation. The NHS treatment is automatically to give T4 based on blood results. It takes no stock of whether this is converted successfully or taken up by the cells. It also does not consider Adrenal fatigue and other glandular issues but simply TSH and T4 in the blood which is a completely simplistic approach to a complex process. I now realise that the only valid test is ' how do YOU feel' and that treatment should be established in whatever dosage and format to result in you feeling 'right'. If your GP will not respond, go somewhere else, read up on the subject ( Dr Peatfield's book is an excellent start) , interact with user groups and take cautious and sensible control of your own treatment.

It is easier than you think!

Good luck!

[soniam in reply to KennyGee]

Thanks KennyGee! Nice to know others think along the same lines as myself! I have been self medicating with NDT for the last four years (as well as Thyca, l have AS, an auto immune bone disease), and Natural thyroid has literally given me my life back! Personally, l felt absolutely C**p whilst taking man made T4 only, to the extent l was rushed into hospital! At the end of the day, the doctor ISN'T always right, and one size does NOT fit all (ie T4 only). I no longer have the choice of having my thyroid, but l damn well give myself the choice of replacing it with something as near as perfect to it, even if l have to take that chance myself! At the end of the day, this is our bodies and lives the NHS are playing with!

What does make me mad, however, is the fact that are so many self inflicted illnesses that get all the help and medication they need; it's all about the greedy funding and pharma companies ...............

[jarock]

I can relate to your situation. I had my thyroid removed about 10 yrs ago . I was doing fine on Synthroid but since the past 10 months everything changed. I started to feel like a different person . I felt as if I did not want to get out of bed, my outer eye brows vanished , thinning hair, tingling / burning on my scalp , facial skin developed hyperpigmentation that got worse by the week I felt as if I was gaining weight daily especially on my arms and thighs. On Synthroid 125 mcg my test results showed that my Free T3 was borderline low but my Doctor kept telling me that I was okay because my TSH was within range . I kept asking for T3 medication but he had a million excuses as to why I did not need it. Finally a few days ago I stated on generic T3 5 mcg along with the Synthroid . To start out I split it and take half in the morning and half in the afternoon. I am already feeling better . I will keep self paying to monitor my thyroid labs We cannot allow doctors to dictate our lives. I thank everyone on this forum. Good luck.

[Greekchick]

Dear Star,

I just had a TT 6 weeks ago and I also have Graves’ disease. I have experienced the same symptoms and issues with drug dosages (I did not have eye problems, however), and I have not yet found the right combination of drugs. It is a frustrating process that sometimes makes one feel very low, and definitely not oneself!

What I can tell you is I believe that you will feel better soon and will find a combination that works for you, whether it is he addition of T3 or some other way of dosing your meds. If I have learned anything from this forum, and I have learned a lot, it is that there are many solutions out there, but trial and error is necessary to get there. You may need an endo - GPs are not properly trained to diagnose or treat thyroid. You may also need to get your bloodwork done privately as well.

I just want to send you positive thoughts and good wishes for your health. I myself have discovered that much to my surprise, the surgery was the easy part - it’s adjusting to life after TT that is proving to be the challenge for me. I, am optimistic that I will get to where I need to be as well. All the best to you.