I was diagnosed with Grave's disease (Hyperthyroid) 5 years ago and had RAI 3 years ago which made me hypothyroid. I cutrently take 75mcg and 100mcg on alternate days based on my T4 and TSH results only! I trusted my doctors were treating me correctly but my legs and arms ache every day and the pain stops me sleeping at night. Recent blood test result T4 - 14 (range 9-21) TSH - 2.3 (range 0.4-4) these were the only tests carried out. Thyroid UK was recommended to me by a friend and wow I now realise there is so much more to it. GP doesn't think my aches are because of thyroid because I am 'in range' they don't know what it is but possibly menopause! I spoke to GP about recent results and I asked to be referred to endocrinologist, he reluctantly agreed. He made me feel like I was wasting his time he said 'there are many people without thyroid issues who don't feel 100% well'! He also said I won't be a priority for an appointment so will have to wait a while. Can you give me advice of what blood tests to ask for and is there anything I could do meantime that might make me feel better. I have started to take selenium and zinc supplement.
Hypothyroid is much more complicated than I tho... - Thyroid UK
Hypothyroid is much more complicated than I thought!
Wow. Ive got Graves too and was offered RAI should I relapse fromremisdion and your descendants of what happens is exactly why I want to be treated on block and replace again should I relapse.
I became hypo as part of my treatment for Graves and I honestly felt hypo is every bit as bad as hypo only in a different way.
Once you are hypo after RAI you are signed off and sent off to your own GP who may or may not give you enough thyroxine to keep you feeling well. Should you not do well on T4 only then unfortunately that's another ball game altogether.
Unfortunately from what I've seen hypo patients are often left to suffer quietly on their own. I also know frommy own experience that there's no such thing as 'fine tuning' in the NHS - if you come anywhere within 'the range' then that's one. It might not be where your body works best but you're within the range and from my own experience you'd need to be pretty ill not to fit in there somewhere.
Tests - well I gave up on the NHS - I kept being promised RAI and I hadn't even had my T3 tested so when no one would test my vitamin D And my B12 which had just scraped over the lower end of the range was 'fine' - I gave up and paid for my own, I use Blue Horizons Thyrois 11 home fingerprick test. That tells me everything I need to know,ok I have to pay but it beats begging the doctor who isn't going good to do it anyway.
Depending on my own test results I might take B12 - Jarrows sublingual methylcobalamin - avoid anything with cyanocobalamin, I used to take D3 spray but I eat a two egg omelette for breakfast every day and my vitamin D is great so I don't take D3, u take CoQ10 and when I was taking carbimazole I used to take 1000mxg slow release vitamin C.
I went totally gluten free to reduce my thyroid antibodies - it worked so I'm sticking with being gluten free. I eat oily fish at least twice a week, lots of green leafy vegetables, well lots of veg, I try to eat 'a rainbow' that's some veg if every colour. I no longer eat junk food or drink diet or other fizzy drinks - I drink water mainly or really weak decaf tea and coffee - and I limit chocolate to a square or two of very dark chocolate and I'll maybe have a bit of gluten free chocolate brownie but generally I don't eat sweets, cakes and biscuits.
You need your B12, vitamin D, ferritin and folate to be high within their ranges.
I felt really unwell when hyperthyroid so there was no option for me other than RAI. Doctors assured me it was easier to manage being hypothyroid but it obviously isn't. You are right you are discharged from hospital pretty soon after becoming hypo and it's up to GP's to manage.
I eat pretty healthily and don't have much of a sweet tooth. I try to eat a low carb diet most (not all) of the time as struggling to lose weight. I may need to be stricter and see if it helps.
My surgery are pretty good at doing bloods when I ask but I haven't asked for everything yet. That's my next step I think to see if I am deficient in anything.
Doctors assured me it was easier to manage being hypothyroid but it obviously isn't.
What the doctors should have said is :
"It is easier for me to manage hypothyroid patients because I don't care how they feel."
Exactly, so well put humanbean, I couldn't agree more!!! I had one trainee endo who held her thumb and first finger up as if holding an imaginary pill and saying 'It's only a little pill' and when I said I didn't care I did not want rai as an option my main reason being that I didn't want to become hypo p, she said 'you won't become hypo'.
I mean, honestly, either she thought I was stupid or, (more likely) she was. I mean no thyroid of my own and I wouldn't eventually become hypo. As if!
As for endos safely out of your way in a hospital - it's much easier for them to manage, they are unlikely ever to see you again and then you're at the mercy of your doctor who may or may not find thyroid problems an area they are interested in.
I agree! Hypothyroid is much more complicated than I thought too! Can't give much advice cos I'm new to all of this too. I can say that my legs were cramping badly before medication and less-so now. Not sure if that helps. Good luck!
Why not ask gp if you can trial 100 mcg every day. You'd still have in range tsh, most probably, and it might just do the trick with physical symptoms. You seem to be on a low dose for someone with no active thyroid.
That's what I thought after reading some of the posts on here, some people are on a much higher dose than me.
My GP read a letter from my endocrinologist from last year (first I heard about a letter) and he was concerned my Graves' disease was returning and was happy I stayed on 100mcg but GP got me to try alternating. My TSH when on 100mcg was just under 1 but GP thought I was over replacing. I have actually started taking 100mcg a day since last week especially after hearing about contents of letter. Hopefully it will help early days yet though.
When I was on block and replace for my Graves, I went to my GP because I needed an increase in my Levo and she was very reluctant to give it to me in case I became over replaced. I was given amitryptiline to tide me over until I saw my endo again, by that time the palpitations caused because I needed more Levo had subsided and I had weaned myself off the amitryptiline, the endo laughed. Next time I felt the same I pushed my case - with the help of my notebook full of symptoms, levels of drugs and blood test results and the fact the endo increased for me last time I felt the same) I was allowed to increase my Levo to 75/100 althenating, I'm afraid I took 100mcg most of the time and did just fine on that increased dose.
I think GPS are scared they tip you back being hyperactive again or even just into interfering with your endo's decision although once you've been blasted with rai and no longer attend hospital then you haven't really got an endo for your GP to interfere with and possibly upset. I just don't think they know enough about the thyroid and how it works.
You may find it helpful to print this graph out and give it to your GP :
web.archive.org/web/2004060...
It shows the distribution of TSH in a healthy female population with no known thyroid disease. As you can see the distribution is highly skewed - most people have a result lower than mid-range. Read the text as well - it is worth reading.
The data for the graph were gleaned from this research paper :
eje-online.org/content/143/...
From my point of view the best part of the paper is the right hand half of Table 3.
It shows the median, 2.5% and 97.5% results for people of each gender at different ages.
So, to pick an example - women with no TPO antibodies and no known thyroid disease, aged 50 - 59, have a median TSH of 1.5 with 95% of such women having results between 0.5 and 3.6.
Hypothyroid people usually need TSH to be lower than the healthy population to have a hope of feeling well. Instead, many of us are forced to have TSH higher than the healthy population because the doctor thinks anything in range will do, or if they think a bit more they aim for the middle of the range (which is still too high and not representative of healthy people).
Thank you for the info, very interesting indeed......!
There must be some GP's/doctor's in the world who have this condition, surely they would be more understanding of the symptoms and could push for better treatment! I am also astounded that such a common ailment is so easily dismissed by professionals.
I have got the impression (but have no proof) that doctors who are hypothyroid and don't do well follow the same route as their patients who don't do well - they start self-medicating.
I have read posts from people who were not doing well on standard medical care and their doctor has said that they are hypothyroid and they do brilliantly on Levo. I think that kind of doctor might be the worst possible to have.
Hey there, Anne - B :
Can identify with so much you have written, and yes, we tend to believe what professionals say I I felt the same as you, but now though, through reading and learning from this website I am working out where I am in all this thyroid madness. I am POST RAI some 12 years and am dealing with Graves, Hypothyroidism and Thyroid Eye disease - one thing you must do for yourself is to ensure your doctor tests TSH + T4 + T3 - I mistakenly believed that mine would be mandatory because of my history - but no - my doctor eventually gave in - made me pay for full test, but at least I now know and have proof that I have a problem converting T4 to T3 - endocrinologist appointment to follow, need to get my ducks in a row, as going from what I read on here, it's not a done deal, and the ignorance and unhelpfulness surrounding such a common health condition beggars belief !!!!
Take control, get copies of any bloods, maybe change doctor, though appreciate that can be difficult as you are probably disillusioned with much of which you thought OK -
Best wishes
Penny
I'm astounded that we don't get the treatment we need......I thought we were in the 21st century!
Thanks Penny, good luck with your appointment.
I had RAI in 2002' have suffered with weight gain, lots of puffiness around face, aching joints, huge bags under eyes. 1 year ago found a new doctor, he said just by looking at me he could tell not on right meds . Levothyroxine 15 years. He said when you don't have a thyroid you need T3 also. I am now on a natural dissected medicine called NP thyroid, also I am taking selenium and b12
Oh wow, well done for finding a doctor who knew what they were doing. Really useful to know that post RAI we need T3 as well as thyroxin.
All the information from everyone that has replied to my post as well as all the other posts has been so incredibly helpful....I now need to make sure my hospital appointment is worth while.....
Goodness, he sounds a real treasure. If you live in the UK contact Louise at ThyroidUK.org.uk and give her this wonderful doctor's details. She keeps a list of thyroid patient friendly doctors for people in need.
Sounds very much as if you should give a 2-fingered salute to your GP and start on NDT. It seems to be the only way to go, for most people at least, after a TT and RAI. Took me 8 years to realise quite how awful the treatment is you get from the NHS for hypothyroidism and take this same action myself.
The sooner you start, the less damage your body will sustain as a direct result of being medicated incorrectly. The symptoms get worse the longer you delay.
Hope you are now getting the right treatment and feel better!
I am very determined now to do the same and get the right treatment thanks to everyone's support and advice.
Just received a letter from the NHS titled 'notification of addition to the outpatient waiting list' . Great news but the body of the letter says I could possibly wait for more than 12 weeks.........very depressing especially since I feel absolutely rubbish!
😩
You need t3 if your thyroid has been burned out, you need to replace what you your thyroid would produce. tsh should be almost non existent and test should only be on your T3 and reverse T3. You need to have T1-T4, that's what your thyroid would produce naturally. I believe Natural Dissected Thyroid is best fit people with Graves
Thank you Vickiek. I am going to make an appointment with another GP in next few weeks and ask if he will do a full blood test for me, I might need to wait for my hospital appointment before I get any other type of treatment.
I've felt a bit better last couple of days, i increased my levothyroxin to 100mcg every day rather than alternate with 75mcg a couple of weeks ago. Hopefully my blood test will show an improvement.
There is a book you can buy called Stop the Thyroid Madness, it may help you. I know ho hard it is . I have had biopsies on my eyes for swollen lacrimal glands, asthma, joint pain, since being on Natural Dissected Hormone all of the above have gone away. But now I have burning n my feet and hands. Going back to the Dr on the 1st. I am taking 5000 mcg of b12 because the majority of Graves have vitamin deficiencies. It will help with joint pain. But only get he methylcobalmin one that you melt under your tongue.
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