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He says that my correct level of thyroxin is 50mg a day, now that i am on that, he says my body is perfectly normal and i can behave accordingly even in relation to running. I have done this but seem to get quite tired still and certainly wouldn't fancy running on consecutive days, have i been given the correct advice?
Good luck Louise in raising your thyroxin dose!
thanks so much for the info/advice, its so hard to get any decent info off the web. Its like looking for a needle in a haystack, what with all the horror stories and then the hundreds of weightloss websites.
Yes, I've got to go back for follow up appointment 6-8 weeks after starting the meds. Like you say, its sounds like a long, drawn out process that you just can't rush. Not good for us impatient runner types! I'm glad that palpitations are not uncommon at the start, thats a big weight off my mind. Of course I'll mention it to my GP when I go back for follow up.
It's so hard because I don't want to bother them with the little questions in the meantime, but I've got so many. I've hardly been away from the place in the last 3 months before I was diagnosed and I don't want to be labelled some hypochondriac/timewaster because then they'll never take me seriously!
Did you have to wait a long time to see a specialist and is it really expensive if you go down the private route? I don't know whether to ask for a referral or just stick with the NHS GP. I just want to feel normal again and get back to normal as quickly as possible. I've already lost 5 months down to this .
300mcg thyroxine does sound extremely high - did you have very high TSH levels when you were first diagnosed, or were they just pushing the dose up for you to try and get rid of the symptoms? I just wonder at what point upping the T4 dose ceases to have anymore beneficial effect and its time to try and add some T3 directly.
Thyroid disease is such a complex issue,and a specialism within endocrinology itself - your GP will only have a basic knowledge.
You can then put all your questions to someone who really knows the subject.
Going privately might well be quicker, but you are still seeing the same person you would see on the NHS. I don't know of the exact cost as I am lucky enough to have private cover, but the blood tests alone are very expensive.
The other thing to be aware of, which you will have gathered from all the emails that have gone on here, is that there is a certain amount of luck involved, in getting to see someone who deals with you as a person not just a set of blood results. You cannot read too much about your condition, but as you say it's hard to find accurate, unbiased information on the internet.
As Shirl says, welcome to the club!!
I'm currently on 75 mcg of levothyroxine and 125mg of Diclofenac Sodium for
Ankylosing Spondylitis.
For about the last 4 weeks or so I can feel a lump in the top of my throat (around the thyroid area) and food (rice and bread) has been getting stuck at the top of my throat on an weekly basis.
I have been to my GPs and they have basically given me some anti-acid tablets (of which were mentioned in this months Running World - OMEPRAZOLE, 20mg) for 4 weeks with a "come back if its no better". Well, 2 weeks in and it is no better.
Does anyone think this is Thyroid related or not?
Many thanks.
Sean.
BB
Think I'll stick with my GP for now and see how it goes. I can always go down the specialist route later if I think they're not being very helpful. Too skint for private I think!
Beerbelly - funnily enough not feeling freezing cold all the time has been the first thing to change for me on Levothyroxine. Don't fancy sweating loads though, being a girl and all.......
You don't say how long you have been on the thyroxine, do you have an existing thyroid condition? I have Hashimoto's Thyroiditis, which caused a goitre & I too was getting food stuck as I swallowed- very disconcerting. I hadn't started on the thyroxine then, but was put on it immediately.
As soon as I did start to take it, the goitre went down within a couple of days & although I still get aches & a feeling of neck fullness I havn't had any more episodes of choking.(My dosage is still not sorted)
My consultant was quite clear though, that if the food problem did not resolve pretty quickly, I was to go back immediately. You know yourself if the food has gone down & then come back up or not gone down at all.I cannot see that antacids will do anything at all. My advice, don't hang around, go back to the GP & get it sorted. You have given it 2 weeks.It could well be your thyroid pressing against your oesophagus.
I have been on the Thyroxine for around 16 months now (late Jan 05). Due for another blood test in early June.
My GP's haven't bothered to find out which flavour of Thyroiditis I have. Just diagnosed with "under-active".
I don't think the anti-acids is the answer however I go to a communical practice and its almost impossible to see the same GP twice and they don't take kindly to "googlers" doing their own internet self-diagnosis!
Many thanks.
Have to say that I have had more support & information from this forum than anywhere else.
Keep us posted as to how you get on. Good luck with the GP, let's hope you get a sympathetic one!
I know what it is like to try to keep going when you feel as though you are wading through treacle! But please be persistent with your GP in order to get your dosage right. I have found that the 'normal range' on the blood test is wide and you will know better than your GP if your dosage is right or not.
My previous GP reduced my dosage from 100mgs to 50mgs which I thought was ok. But I soon noticed I was getting more sluggish, etc. However, my GP is currently refusing to increase my dosage even though I know I need to take slightly more in order to function properly so I just take an extra tablet each day. My bloods are still registering a normal so it must be ok.
I am running well, have lots of energy and feel great so don't give up, there is light at the end of the tunnel.
BB
How can you double dose & they not know? You will be refilling your prescription twice as often.Don't you risk running out of tablets?
My bloods were registering 'normal' on 50mgs per day but it was not the right dosage for me. So I increased my dosage and my bloods still register 'normal'.
I will admit to buying thyroxine on-line which is why I do not need to refill my prescription more often. I know it can be risky buying pharmaceuticals on the internet but I don't see that I have any other alternative.
Mrs Angel of Death,
I also only get a prescription for 56 tablets at a time and just fill a repeat prescription each time. Silly but it seems to be the system.
I think its terrible that you've been forced to buy drugs over the internet in order to feel well enough to run. Doesn't your GP listen to you at all? Can you change them?
One thing I don't understand though, is if 100mcg still has your TSH in the normal range, then why on earth did your previous GP reduce it to 50mcg in the first place?
Have to admit to being somewhat shocked that you have had to resort to getting your thyroxine online. Surely as Night says, you can go to your GP now & tell him that you have been taking the higher dose, especially as your bloods have not changed?
I have got my check up this afternoon, hoping for a higher dose as my neck still swells up from time to time. Have to say I am nervous now that my dose won't be raised!
Successful visit, having had my bloods checked,am up to 75mcg for the next 8 weeks then review again. The consultant did say though, that once you get to the optimum dosage as regards your blood levels, it still takes time for your body to feel the effects of being 'within normal limits'. In other words you can feel not quite normal but your blood results are telling you that you are- I thought of you. It all comes down to that p word- PATIENCE!!!!
Shirl,
Got an explanation of why my neck keeps jangling despite taking the thyroxine- apparently with Hashi's it's the active disease (antibodies killing off thyroid tissue)& that will carry on now until my thyroid is 'completely burnt out'.Nice.
Taking the thyroxine takes some of the pressure off the thyroid, but it doesn't stop the disease at all. Guess that makes sense.
Another rung of the ladder climbed- will wait to feel the benefits of the increased dosage.....
Hope everyone is enjoying the warm weather- though I am STILL the one wearing the sweatshirt!!!
glad you managed to get your dosage upped and hope you start to feel better on the bigger dose.
I've been on 50mcg for 6 weeks now and this week was really strange. The first few days I was really high and had tons of energy, felt like I was flying and was really happy. 'Great' I thought, 'this must be the drugs finally kicking in and its going to be fine from now on.' Even managed a really slow run! Then today its like I've just crashed - exhausted and cold again, depressed, mind foggy and a bit spaced out. What's going on? Did anyone else get this?
Getting my bloods checked on Monday so really interested to know what the results are this time.
Yippee 75mg! I think you are right about being patient, i have had thick hardened skin on my knees for about 5 years which nothing has been able to cure but after 5 months the thyroxin now seems to be working on it and they are now very near silky smooth ( what a strange symptom).
Night,
I can totally sympathise with the foggy mind and the spaced out feeling, unfortunately i've yet to get the high.
Best of luck for the blood test.
I have had ups & downs, but the ups have usually been at the start of a dose increase. When I started on 25mcg, I had a fantastic week then it was a slow decline before I went up to 50mcg. Again, I had a great week or so, even lost a bit of weight. Then it was a slow deterioration & the weight went back on.
Very odd that you should have a good week at the end of the 6 weeks, although I think this is all about your body adjusting.Guess that's why they say you should not change doses for at least 6-8 weeks.
The other thing is that you might have had a good week & without necessarily realising it, got carried away & overdone it with the run etc.
I am very guilty of that, & always end up paying for it afterwards with a few days on the sofa!
Let us know how you get on on Monday. Good luck.
Mandalil,
You don't have to tell me about weird symptoms- I am amazed at how the thyroid can wreck your body. I had to have a mammogram last week (I have had lumps & bumps all of a sudden) & guess what? The breast chappy said it's due to my thyroid.I was very relieved that it wasn't anything sinister.
Have noticed that my skin is not as dry as it was.And my eyebrow has grown back...
One day I will be completely normal...!?
You have to laugh otherwise you'd cry.
I can laugh about it all now, but I have to say that when I started on this thread back whenever, I was a mess, but didn't realise quite what a state I was in. Probably just as well,hey?!
About 6 months ago on a routine trip to my GP he said he thought my neck looked swollen and recommended a blood test for thyroid function - it came back normal.
Over the past few months I've had a persistent cough and difficulty swallowing and I can feel a lump on my right hand side of my throat. It seems to be swelling up towards my ear. I'm unsure if this might be a swollen thyroid. am going to see GP tomorrow to see what he thinks - just wondered what you people make of this?
What sort of questions/information would be useful for my appointment tomorrow?
Loobyloo2, I've always had a lump on the right hand side of my throat which I thought was a lymph node. At some point it got bigger which worried me a bit, gp suggested just leaving it, I did that for a year or so, but earlier this year I wanted to get it checked out to stop me worrying. Also, the lump sometimes feels very tense but not really painful.
The (different) gp ran all sorts of blood tests that came back normal and refered me to an ENT dr. That one thought it was thyroid, especially because it moves up and down when I swallow, ordered an ultrasound and that confirmed it is a non-cystic thyroid nodule. They also said I have a smaller one on the other side.
I now have an appointment with a thyroid specialist in a couple of weeks time. Thyroid blood work so far has given normal values. He will probably do a fine needle biopsy.
Some things I cam across when reading up on thyroid nodules: most (97% or so) are benign, can be removed if they get in the way of breathing or swallowing. If they are cancerous than in most cases (again 97% or so) it is very easily treatable, with 100% survival rates.
The various doctors seemed happy that my lump was mobile and smooth - apparently when it feels like it's stuck to other things, or feels uneven it can be something more unpleasant - but I'm no doctor so don't worry if yours is like that.
One thing you can do is look at the symptoms of hypo/hyper thyroidism and see if you recognise any of them. Which is tricky, as most of them are quite general...
Make sure to tell the dr about the difficulty swallowing - that sounds serious enough to move you through the system quickly (and it was one of the things my gp asked about).
Good luck with your appointment tomorrow!
I'm a loobyloo too! Have to say with my swollen thyroid, I've not had a cough as such, just a feeling that I have to clear my throat.I have a feeling of pressure on my windpipe.I get what feels like ear ache (you know when you have slept on your ear at a funny angle and it hurts). That feeling tracks up to my ear along the side of my neck. The swelling itself is at the front of my neck, although the pressure feels more to the left inside my neck than the right.
An ultrasound scan will determine if your thyroid is healthy or not.Along with blood tests.
All these neck symptoms are accompanied with major loss of energy (I mean serious inability to do more than is absolutely necessary), unexplained weight gain, hairloss (especially the outer part of your eyebrows), dry skin, brain fog, constipation,the feeling of being cold all the time,pins & needles in your extremeties, the list goes on...
If you have any of the above, tell your GP as all are indicative of an underactive thyroid. The thing is that the symptoms can be quite subtle- they don't just appear overnight from what I can tell.
Good luck with your GP- let us know how you get on....
Louise - I also have a feeling of needing to clear my throat (hence the cough), and for the past week or so I have also felt the pressure in my ears that you talk about. I don't really have any symptoms to speak of for either under or over active thyroid - but as you say, they can be subtle.
Roos - Thanks for all that useful info. My lump doesn't really feel like a cyst or nodule though - more like a swelling alongside my throat. I too have read about the various outcomes and am therefore trying to convince myself not to worry too much (but this is difficult when you are a natural born worrier like me!)
How long did it take the two of you to go from GP to specialist? - I'd like to move quickly and I do have private health insurance. I just don't want GP to say 'go away and come back in a month' which tends to be their standard answer to most things these days....
Armed with the info & support from this forum, I went straight back to my GP & asked for a 2nd opinion- luckily she agreed with me & after another infuriating few weeks I saw the chap I see now. I have a developed a good rapport with him & he has certainly been thorough with all the tests.he also explains things to me & gives me the plan of action until my next appt.
One thing we have all learned, is be assertive when you get in there- without being obnoxious or rude.
Stand your ground, this has been going on for a while now & you'd like to get it sorted once & for all.
State your symptoms calmly & clearly- write them down if you have to & take the list in with you. And anything they say that you don't understand, ask them to explain right there & then. Do not be rushed.
Good luck with it all.
Just got back from my GP appointment. He seems to have jumped into action which is quite reassuring, but also a bit scary. I've been sent for blood tests (thyroid, liver function etc) and an u/s scan of my thyroid, and referred to head/neck Consultant. I've managed to book u/s for tomorrow and hopefully see Consultant next week.
The GP said all this is just to rule things out, he said he couldn't feel a lump so I feel OK but am a bit apprehensive about all this.