This is my first post - yikes! What do people think about being prescribed levothyroxine but never seeing a GP, all been through phone calls with GP secretary after blood tests done by Nurses. I'm thinking I need to see someone to discuss stuff. I was put on 25mcg in December, 2 blood tests later I am on 50mcg. I have been told antibodies are coming down ok, so no retest for 12 months - that's a long time isn't it?
I went to GP originally not even with the slightest idea I might be hypothyroid or very low in Vit D. I haven't noticed any changes in anything at all, not a sausage!
Do others think it is ok to ask for a 20 mins appt to take a list of queries along, and do others get their medical records 'online' as it were, I am thinking about it.
All help gladly received - I am thinking I need to be a bit more proactive and get educated about what all those numbers and levels mean!
Thank you,
Pigletts
ps - sorry if this post is a bit formal, I have never posted anything anywhere, except in a postbox!!
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Pigletts
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Absolutely!! It makes me so cross that GPs don't take this disease seriously. I was given my diagnosis over the phone too, an appalling way to be told you have a chronic illness and will spend the rest of your life on medication. I wasn't given any info either, just told that it's fine cause one little pill a day will make me better...what a joke that was. Without this group I would be bed ridden, as it stands I am completely well again but its taken 3 years to get here and I have to self medicate plus take a long list of supplements.
Apologies for the rant but yes...go back to your GP and make them earn their money by answering your questions. Maybe take some info from ThyroidUK website with you to discuss too.
Feel free to post results on this group though and we will all gladly offer advice and info.
Thank you, I need to get back to GPs methinks! The weird thing is I never went to GP with what I understand are symptoms of hypothyroidism, but I have had bad headaches and migraines (less severe migraines over time, thank God, so I can at least function while suffering one now, rather than going to bed for a day or two) over a number of years, and went about increase in number of headaches and length they stayed with me. I had also thought it was quite normal to fall asleep about 8.30pm in front of the telly, thought I am just getting old (48!!!!!!!), and have always been a morning person, so didn't mention this - maybe I should have!
I must get more proactive, I must get more proactive!!
I was diagnosed after going to the doctors with what appeared to be symptoms of Ovarian Cancer! I knew nothing about hypothyroidism or it's symptoms but my main ones at the time were extreme fatigue, bloating, backache and elbow pain (doctor never associated that with being hypo but joint pain is common).
Stick with this group, make sure you always ask for your blood results from the doctors and if you have any questions just ask...you'll get sorted, it just takes time xx
Thanks very much, I am already finding what's being said really helpful and supportive. It's funny you mention elbow pain, I overdid gardening last Spring, I know that's what sparked it, had really painful elbow and forearm and difficulty relying on my arm when holding pans etc, weird sensations down my arm and in hand. I was told recently it was tennis elbow and that it would eventually sort itself out. It's still not sorted, but getting there, I wonder how much quicker it would have healed if I didn't have the thyroid thing 'going on'?
Very interesting, has your elbow pain/discomfort gone away totally? I am a bit worried that my right arm will now always be more prone to weakness and pain having had it for nearly a year now. I didn't even think of asking if my hypothyroidism might have anything to do with the pain - doh! Wish I had now, but I don't suppose it would have helped me much.
50mcg is only a starter dose. You will need bloods retested after 6-8 weeks on this dose
No you are correct, waiting a year to retest is likely inadequate
Nice guidelines saying how to initiate and increase. Note recommended starter dose is 50mcgs and that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine
So do you have copies of most recent blood test results and ranges?
If not you are legally entitled to printed copies.
UK GP practices are supposed to offer online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
In reality many GP surgeries do not have blood test results online yet
Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up. They can make nominal charge for printing but many will do so for free (£10 max)
You mentioned low vitamin D and antibodies
So your high antibodies confirm you have Hashimoto's also called autoimmune thyroid disease
Low vitamin levels are extremely common
How low was vitamin D and how much have you been prescribed? Has it been retested?
Have you had folate, ferritin and B12 tested too? If not it's usually a good idea to get them tested
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly.
Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's gut and gluten is very poorly understood
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
Ideally ask GP for coeliac blood test first or get a postal test kit £20
Thanks so much for all that information, I have had to print it off so I can have a proper read through!!
Perhaps I should have said, but I didn't want to write too much in case I bored everyone, I had a coeliac screening blood test last week, as I had asked for one, it was negative, but with all the information you have given me, and other info, I think I may try gluten free to see what happens. My other half is not too keen though...... We bake our own bread and he is suspicious of other flours etc!
I was started on 25mcg in December, and moved up to 50mcg in January, and they are saying that is fine, retest 12 months. I will be trudging to the Doctors again to ask for my test results etc, once the snow has gone, and see what happens. My Doctors have always been ok I thought, but then I have never been given a diagnosis like this before. I have worked in the NHS (not as a Doctor or Nurse though) so know the pressures staff are under, but also know it is the people that ask and get assertive that tend to get results.
I sympathise, I absolutely loved bread and also used to bake my own but my antibodies have come back into normal range since going GF and my IBS barely ever rears its head anymore. Your other half can still bake it for himself and you could buy GF? If you are both into baking then I would recommend the River Cottage Gluten Free cookbook..I am currently making brioche! There are a lot more ingredients in GF baking but once you have them (some you can only buy online) they are easy to make and you get to experiment with different flours..chestnut flour goes great in chocolate recipes for example and pao de queijo made with Tapioca starch is absolutely delicious!!
For the most part I don't buy GF products, I just omit gluten, if you cook from fresh it's pretty easy to do as most fresh food doesn't contain it anyway, it's things like ready made sauces, gravy, stock etc..that you need to check.
Perhaps I should have said, but I didn't want to write too much in case I bored everyone, I had a coeliac screening blood test last week, as I had asked for one, it was negative, but with all the information you have given me, and other info, I think I may try gluten free to see what happens.
I was given very thorough testing for coeliac disease - endoscopy, biopsies of tissue from the gut, blood tests. All came back negative (this was quite a few years ago).
Move on several years and I finally tried going gluten-free as an experiment, after I found out how helpful it was for hypothyroid people even if they don't have coeliac disease. I felt absolutely terrible - like I had severe flu. I didn't realise at the time that this was common when first giving up gluten, and it wears off. I just thought something terrible was happening that I didn't understand, so I went back to eating gluten again.
Move on a few more years, now with more knowledge about what to expect, I went for it again, better prepared, and this time I got benefits from going gluten-free quite quickly. It was worth the effort for me, and I've kept it up for three years now. I wouldn't go back to eating gluten.
But anyone that gets no benefits from going gluten-free after, say, three months, might as well go back to eating it. Going g-f isn't a life-sentence.
Yes, I remember feeling ill initially after first going GF and felt sure it was withdrawal symptoms. I wouldn't go back now either despite still practically salivating in the fresh bread section of Sainsburys
Thanks for the warning about possible withdrawal symptoms! Thanks also for your pointers about things to try, I do a lot of cooking from scratch, but maybe looking a bit more at ingredients is a good idea - we tried rice noodles yesterday for the first time, with a home-made stir fry - however, I did then realise that the soy sauce was most definitely not gluten free!!!! Is there an alternative to soy sauce, or just cut out of diet do you think? I remember reading about soy not being good for thyroid issues??
I have asked Humanbean as well, but do you think there is anything to be gained by trying to go gluten free at home as much as possible, but not worrying too much if a gluten free option is not available when out and about? I suppose I am asking if I cut down on gluten, might this possibly help, or would that just be a waste of time? Does it have to be all or nothing do you think, I would welcome your views and what you have found from others.
It does need to be strictly absolutely gluten free.
Eating out at restaurants is relatively easy these days. Eating at friends and family can be much tricker
Yes I had two negative coeliac blood tests, twenty years apart, both negative.
Never had any gut symptoms, but like many with Hashimoto's had low vitamins, especially vitamin D.
Two years ago had endoscopy, showed I was severely affected, exactly as if coeliac. DNA test after said, unlikely coeliac. It's not always clear cut.
Anyway going strictly gluten free was a turning point. Never would have considered trying it if hadn't been on this forum and read so much about gluten being an issue.
In 2 years since going strictly gluten free, my antibodies slowly lowering at each blood test. My endo now completely agrees gluten free is significant change.
Gains from gluten free were almost instant significant reduction in underlying anxiety. Was able to ween off and stop propranolol (beta blocker) within weeks of going GF. I had been on propranolol nearly 20 years. Only way I could tolerate Levothyroxine
Use to get erratic heartbeat, that stopped too (though that may have been magnesium supplements helping that as well )
Couldn't walk due to terrible bone pain of low vitamin D. Did finally manage to increase level of vitamin D, but was still on high dose to do so
Felt like circulation had gone from thick treacle to fresh spring water
Slow improvement in brain fog and brain function, sharper and less forgetful, used to often struggle to find words etc
Because of gluten intolerance endo agreed I needed small dose of T3. That has significantly improved gut function and have been able to reduce level of vitamin supplements, especially vitamin D
Wow, life changing then. I think I must try gluten free then, as several things you mention are really ringing bells, especially the anxiety. I have been fighting that for over 20 years, and thought it was the anxiety that was the thing making my digestive system fall apart much of the time. I would never have thought that gluten could possibly be an issue, but then I didn't think that I would be found to have autoimmune hypothyroidism either, so there you go!
It must be really difficult when all the tests they can do tell you you are not coeliac, yet you are much better gluten-free. I only had the blood test, which they said was negative. I have one hot cross bun left in the bread bin at the moment, but am thinking that after that I may go gluten free. By chance I have a gluten free bread mix that I had got for a friend who comes to stay with us, who is coeliac a little while ago. I might make that this afternoon....
It is getting easier to find pubs etc who offer gluten free choices, and the ones we have found for when our friend stays with us are great, so we tend to go to the same ones (we love walking in the Peak District). But there are some pubs etc who still find this difficult. However, I did not realise that even crumbs can affect a coeliac person so much, so I will apologise to our friend, although she has never said anything about our toaster / grill!
If this is not too personal, can I ask what benefits you can get from gluten free even though you are not diagnosed as coeliac? Is this a daft question, but is it worth trying to go as gluten free as possible at home, but accepting that occasionally I will have gluten when I have to, when there is no gluten free choice for instance, or is that just silly, and not even worth considering?
I had a dreadful temper which got worse and worse starting from my 30s onwards. My temper problem vanished within a week of giving up gluten.
I had severe depression, which eased a lot once I gave up gluten.
I have balance problems. My balance improved after giving up gluten.
I didn't absorb nutrients very well. It took me nearly two years to get my severely low iron and ferritin up to optimal or close to it. I only finally made it after giving up gluten. I still lose iron quite quickly, but not as quickly as I did. Now, I only need to take an iron pill a couple of times a week to maintain my levels in a sensible place.
Oh dear, some of what you have said that were issues for you are me, definitely (my husband would agree - particularly about the temper and feeling really down - I have always put that down to a stressful NHS job in the past and now running a business from home, and just being a terrible worrier about everything).
I don't think I am low in Iron, not sure about Ferritin, but when the snow goes, and when there will be less ill people wanting GP appts, I am going to 'haunt' the surgery about results of tests I have had, and become more proactive about my health generally.
Thanks a lot for your help, its really kind of you to help those who are only at the start of the journey.......
I have been told antibodies are coming down ok, so no retest for 12 months
The two halves of that sentence have absolutely nothing to do with each other! Antibodies fluctuate all the time. The fact that they are coming down means nothing. Your doctor - or whoever - probably thinks that levo is responsible for them coming down. It isn't. Levo isn't a cure for Hashi's. It isn't a cure for anything. It's thyroid hormone replacement. It just replaces the hormone your thyroid can no-longer make in sufficient quantities.
The protocol is to test six weeks after any change in dose. They should not leave you on 50 mcg - which is just a starter dose - for 12 months. That is negligence, and grounds for a serious complaint! 50 mcg is not going to make you well. It's not going to do anything much. You need to press for a retest six weeks after starting it. Then, get a print-out of your results - a legal right - and insist on an increase of 25 mcg, if your TSH is not below one.
All this points to the fact that nobody at your surgery seems to know what they're doing. Not the nurse, not the secretary - well, you wouldn't expect them to - and not even the doctor! That doctor needs putting in his place. He should not be farming out patients to his secretary.
Oh dear, thanks for that, I will be getting down to the Doctors once the snow has gone. I was started on 25mcg in December, then after another blood test in early January, put up to 50mcg. I have now had another blood test last week, and that's when I have been told 'things are moving in the right direction', and no retest needed for a year. So I suppose I have had the retest to check that 50mcg is ok?
When I asked what the antibodies should be, was told they were 108 (were 154 in January), but the secretary didn't know what they should be and didn't give any more information. I had a coeliac blood test as well, after I asked for one, that was negative. I thought I had vaguely got my head round what all the letters and numbers mean for TSH etc but I need to do more reading and asking all of you what you think.
Things may have started to move in the right direction - although without seeing all the results, I wouldn't know - but they won't move any further without an increase in dose. In fact, they could very well go backwards without an increase in dose! You must get a print-out of all the results. It is your legal right to have one.
The antibodies are totally irrelevant. It doesn't mean anything that they have gone down. They will probably go up even further after the next immune system attack. I doubt they even know what the antibodies do. It's not the antibodies that attack the thyroid. But, after an attack, when a lot of cells have been killed, there will be a lot of debris lying around. The antibodies come in to clean it all up. They are the body's dustmen. Which is why they are highest just after an attack, and then reduce in number. I'm afraid these people really don't know what they're doing.
t's not the antibodies that attack the thyroid. But, after an attack, when a lot of cells have been killed, there will be a lot of debris lying around. The antibodies come in to clean it all up. They are the body's dustmen. Which is why they are highest just after an attack, and then reduce in number.
What is it that is attacking the thyroid, if the antibodies are just clearing up the mess?
I've said to so many people that antibodies attack the thyroid that it is embarrassing to discover I've been talking rubbish all this time.
Now you're asking! lol And my brain's gone numb - think it's something to do with the cold, I'm just not firing on all cylinders at the moment, which was why I was deliberately vague. Most people think it's the antibodies, I did too, at first, but... I think it's actually lymphocytes produced by the immune system.
So, what is the difference between a lymphocyte and an antibody?
'As nouns the difference between lymphocyte and antibody is that lymphocyte is (cytology|immunology) a type of white blood cell or leukocyte that is divided into two principal groups and a null group; b-lymphocytes, which produce antibodies in the humoral immune response, t-lymphocytes, which participate in the cell-mediated immune response and the null group, which contains natural killer cells, cytotoxic cells that participate in the innate immune response while antibody is (immunology) a protein produced by b-lymphocytes that binds to a specific antigen.'
My reason for thinking that antibodies attack the thyroid is that, in a healthy person with a healthy immune system, their antibodies attack and destroy dead or damaged or diseased cells, viruses, bacteria, and the stuff the body doesn't want.
But in most people with hypothyroidism they have the autoimmune variety of the disease. And in autoimmune diseases the antibodies destroy the wrong target and damage the cells of the body they should be protecting, for example the cells of the thyroid itself.
I don't think antibodies attach dead cells. There wouldn't be much point, would there. But, they do clear them away. Which is what they do to dead cells after a Hashi's attack. But, I think it's the lymphocytes that attack. I could, of course, be wrong, but that's what I've read. If anyone knows the truth of all this, please do tell us how it really works!
Autoantibodies are proteins of the IgM class (immunoglobulins). They partially recognise some of the proteins say in the thyroid (anti-nuclear, anti-thyroglobulin for example) bind to them and now signal macrophages and other cells to engulf the whole complex, carry it away and destroy it). It's a perverted analogue of what ordinary antibodies do when they meet a foreign substance or protein, bind, engulf and remove but now with no harm to the body.
I agree with greygoose , if that sentence is accurate and is what they said , I would run away vey fast. However , you would likely run towards the statement of ''when your TSH is in Range - if so - keep om running .... keep on running ... welcome to the club.
If you arrive somewhere where they tell you , '' we will keep raising your dose until both your T4 and T3 are at an acceptable level whilst accompanied by a significant improvement in your symptoms - follow the white rabbit towards recovery.
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