I know every time i come to this board i am always whinging but seriously i am really fed up now, ive been signed off work for another 2 weeks to which i have spoke to the matron at the hospital about her response to this was that she wanted to see me in her office when i return to work as ive had so much time off work!
I mean any one would think i loved feeling like this and that i was just using this as an excuse but i am utterly exhausted and i am now having alot more bad days than good days!
Ive had to keep going as a matter of speech for my children but it takes its toll on my body, and at night i am finding it extremely diffecult to get off to sleep despite feeling exhausted
I am still trying to contact the endo team but i am now concerned that my boss who is a nurse thinks i am trying to 'milk it' please has anyone else had problems with working and thyroid disease? and if so how did you find a way to get around the problem?
I am actually quite distraught today and can not pull my self out of this downward slope
Love
Clare xxxx
__________________ Diagnosed with overactive thyroid August 2011
diagnosed with graves disease Dec 2011
The following 3 users give hugs of support to: clare1982 Eir33 (06-08-2012), OnSafari (06-07-2012), sammy64 (06-07-2012)
I have my own business and I work from home. I know that it was very challenging when I was hypo. You are severely hypo now so, of course, I understand how hard it must be for you.
I think you know that we shared with you the proper way to be medicated for hyperthyroidism and, unfortunately, your doctors haven't been doing that.
It's going to take some time for you to climb out of the hypo hole and I'm sorry to say, there's no chance it will happen with your most recent dose adjustments.
I suggest that you do everything possible to understand what's going on with your body (including interpretation of labs) and do whatever it takes to find a doctor who will medicate you properly. It's your only hope of achieving wellness.
If your doctors were medicating you properly, you would have been free from thyroid symptoms within 6-8 wks. of starting anti-thyroid drugs.....and would most likely continue to be free from symptoms now. The worst that a properly-medicated patient experiences is very minor hyper symptoms for a week (at most) after dose reductions.
You have been suffering needlessly.
I know some people/doctors have commented that hyperthyroidism is harder to treat but, I never understood that line of thinking. Achieving wellness with hyperthyroidism happens a LOT faster than what is required for hypothyroidism.
While it would be nice if doctors took care of things for us, our health is really our responsibility as well.
I hope you can find another doctor to care for you. And, if you are like many of us, you will understand what needs to happen with your labs and you'll work with your doctor for dose adjustments.....that seems to be the only way to achieve wellness.
Hello Sammy
Thank you again for your reply it really makes more sense than what a gp or an endo explains most of the time when ive gone to my consultant appointment i feel like im a hinderance to them and that they cant wait to shove me back through the door!
My levels are very low and yet they have left me 12 weeks before seeing me again but advising me to have a blood test 6 weeks after my appointment and then another blood test just before i go and see them again and they would contact me and let me know if i need to adjust the dosage!
To me this is absolutely rediculous as a diagnosis/drug change should be based on not only the lab work but also on how i feel (i may be wrong with this) but i dont feel as though im being taken seriously enough with my thyroid symptoms etc and feel apart from you guys pretty much on my own
My hubby and his parents have been very caring and understanding they can see that i am not very well but the so called experts just herd us in like cattle!
Thank you once again im just awaiting a phone call from the endo team (if this ever happens) so i can ask them exactly what my levels are and what is next in line to try and as you have said before question them about the dosage etc
Hugs and Love
Clare xxxxx
__________________ Diagnosed with overactive thyroid August 2011
diagnosed with graves disease Dec 2011
Thank you once again im just awaiting a phone call from the endo team (if this ever happens) so i can ask them exactly what my levels are and what is next in line to try and as you have said before question them about the dosage etc
Clare
I'm sorry to say, I don't have much hope for your current endo team. They obviously have no idea how to treat hyperthyroidism. You need a radical dose change and I can't picture them agreeing.
Do you have the option of seeing a different doctor? Sometimes, "whole body" doctors are better with thyroid treatment than endos. Alternative MD's are often good as are osteopaths or internists.
I really think you should considering meeting new doctors until you find one that recognizes how poorly your care has been managed.
Of course, it would be best for you to have your full lab history to share. It's your legal right to get hard copies of all lab reports - hope you can get them from your endo team.
Hi Sammy,
well im not sure how i can get another endo to treat me although i have a friend who has also got thyrotoxicosis so maybe i can ask her who she sees on a regular basis but i really cant understand why there are more information for this horried disease and also why they (the endos) seem to treat diabetes more effectively than they do with somone with thyroid disease!
I also have found that although i am very underactive i am still loosing weight, i have not changed my diet etc this is soooooo confusing and unfortuanately there appears to be no *quick fix* for this
Thank you so much again i shall see what the endo says when they phone back if they actually do phone back
Love and hugs
Clare xxxx
__________________ Diagnosed with overactive thyroid August 2011
diagnosed with graves disease Dec 2011
As I mentioned, I think you'll have better luck with a "non-endo".
Endos have been the subject of some recent, international petitions due to their lack of knowledge about the thyroid and its proper treatments.
Many of us have found that "whole-body" doctors are better.
You just might want to think hard about your diet - maybe you're eating the same foods but, due to the loss of appetite that can accompany hypothyroidism, you're not eating as much.
I have just got off the phone to the endocrine consultant who has said that my levels have infact dropped further since they were last done
TSH 6.79 (0.35 - 5.00)
Free T4 7.7 (11.0 - 23.0)
Free T3 3.8 (3.0 - 6.3)
The above were taken while in hospital 2 weeks ago!
the next results are the ones taken just before my consultant appointment in april
FT3 4.6
FT4 7.3
TSH 4.13
The plan of action now is that i await a phone call tomorrow to inform me of which medication to up the consultant also said that they may decrease the Carbimazole (result!!!!!) and up the levothyroxine
I also asked if what i am feeling is normal and they said yes and also said that if work want to discuss anything about my levels etc then they need to contact them and with my permission they will discuss it with them so in retrospect they can discover as much as i know and that is i am bloody indeed poorly
Thank you for reading guys xxxxx
__________________ Diagnosed with overactive thyroid August 2011
diagnosed with graves disease Dec 2011
I have just got off the phone to the endocrine consultant who has said that my levels have infact dropped further since they were last done
TSH 6.79 (0.35 - 5.00)
Free T4 7.7 (11.0 - 23.0)
Free T3 3.8 (3.0 - 6.3)
The above were taken while in hospital 2 weeks ago!
the next results are the ones taken just before my consultant appointment in april
FT3 4.6
FT4 7.3
TSH 4.13
The plan of action now is that i await a phone call tomorrow to inform me of which medication to up the consultant also said that they may decrease the Carbimazole (result!!!!!) and up the levothyroxine
I also asked if what i am feeling is normal and they said yes and also said that if work want to discuss anything about my levels etc then they need to contact them and with my permission they will discuss it with them so in retrospect they can discover as much as i know and that is i am bloody indeed poorly
Thank you for reading guys xxxxx
Clare
Please take a good look at your most recent results and also remember that the right way to be medicated for hyperthyroidism is to take the lowest possible anti-thyroid drug dose that will maintain the FreeT4 level towards the high end of the range, regardless of TSH.
Your FreeT4 level is below-range!!!
Instead, it should easily be closer to 20.
Your previous results were just as horrid so, it's no wonder you're feeling just as horrid.
Now, your doctors have you on a meds regimen that's called "Block and Replace Therapy" wherein the patient is supposed to take a small dose of anti-thyroid drug (in your case, carbimazole and a small dose would be considered 5mg). In addition to the ATD, the patient takes some thyroid hormone replacement (in your case levothyroxine) in whatever dose is necessary to keep that FreeT4 level towards the high end of the range.
Thyroid hormone (levothyroxine) has no side effects. Carbimazole can have side effects.
So, if your doctors are doing things right, they will lower your carbimazole dose to 5mg.....and then figure out how much levothyroxine you need.
The only reason they are telling you that what you are feeling is normal is probably due to the fact that they improperly medicate all of their patients and keep them feeling miserable.
I have no thyroid symptoms. Why? Because I am properly medicated.
You can be as well - don't let these crazy doctors railroad you.
