I contacted my doc again as I mentioned I have been on Levo almost 3 months at .50 mg my TSH was 1.75- 3 weeks ago-but I still have a ton of symptoms-my doc said even when the TSH reaches normal it can take several months for the body to catch up-she did agree though to have me come in-in another month for another "full" thyroid panel-to see what all my numbers are at that time-to see if I trully am on the right dose. So apparently "patience" is the key here? For good or bad? and again I have been slowly getting symptoms for maybe 2 years? So definitely I guess they won't go away overnight either-the symptoms. But I will keep you posted-as what she says after my next Blood test........
Yes I was. I'm not sure about that diagnosis either. Over the years I did have a neurology consult twice to rule out other problems.
Thanks Peter and I'm sorry to hear that, I hope the proper diagnosis has meant proper treatments and back to some sort of reasonable health?
That's a relief, I think I'll go ahead with a neuro just to be sure, especially because of Peter's experience below..
Thanks April, God the patience is needed alright. I haven't worked since December and missed the summer of the century here in Ireland, patience is running thin! I was interested in the suggestion by one of the other contributors regarding the conversion of T4 to T3 and that no amount of t4 meds will solve that problem. I asked my endo about Reverse T3 and he scoffed. Think I need someone who keeps up with the new studies. (and he's a teaching Prof in one of Ireland's top hospitals ! Scary) Hope you feel better soon!
Does anyone's gp or endo check t3? Mine was only checked once 18mos ago by gp but never again and endo categorically stated that he doesn't check t3.
Autoimmune disease is part of hypothyroidism. Both Hashimoto’s and Grave’s are autoimmune. Thyroid patients tend to have gut problems, FM, MG, RA and many other autoimmune diseases.
Sadly, the synthetic meds are known to cause and worsen both hypothyroid disease and autoimmube disease.
The meds work best at the high end of normal but it’s impossible to keep them stable because they suppress your own thyroxin production. The ratios are not bio identical so you tend to get T4 on the high end and T3 on the low end, so you’re hypo and hyper at the same time. Aside from that, the ratios of T3/T4 being off from biological are very disturbing to the body, as hormone regulation in the body is based on ratios. When the hormone ratios are correct, our hormones are ‘balanced’.
There was a huge long term study done in Scotland that showed no relief of thyroid symptoms from the synthetic T4 meds.
That's V useful re the ratios and the synth meds Catherine thank you. Will try to find that study. I find getting docs to take any info from the patient is a major hurdle. The ones I've seen don't like you to know much at all. What would we do without the Internet.. My sister has chronic fatigue and high tsh and TPO abs and her endo prescribed her efforex for her 'depression'. Thankfully she looked it up on the Internet as it would have been quite dangerous to take it with an anti anxiety med she was already on. More than likely she's got anxiety from thyroid dysfunction but no thyroid meds were offered to her. Baffling.
I think that is a good idea. That was one of the things I was tested for.
Yes Kat, if you actually read the side effects for every drug prescribed, then do a search to find out what other patients say, you’ll think long and hard about taking medications.
Most meds cause kidney and liver damage (both very serious) as well as the disease/symptoms they’re supposed to cure.
Once I had a diagnosis the MG could be controlled, and put into remission. The secret, my doctor explained to me, was to avoid prednisone. And once the MG was treated the thyroid settled right down. I then decided to replace both knees before something else came along. I think I am having had as much trouble recovering from these surgeries as the MG.
Crikey! Can imagine! One knee would be bad enough.. Great to hear the MD is under control. Lucky you had good advice re the prednisone..
Minefield... V difficult to be sick while also research your meds and clinical studies, stand strong with blasé doctors, manage diet, supplements, exercise etc etc .. Argh!.. I've decided. I'm going to be a fairy princess in my next life.
Holy cow! Good to hear the tip on the prednisone- that’s usually the first GoTo for anything that doesn’t have a specific treatment.
Interesting that the MG caused the hypothyroidism. How did you treat the MG?
The philosophy of the neurology department at my clinic is to use Mestinon for treatment and Cellcept for immunotherapy of MG. They use Cellcept because they find it has the least side effects of all the immunotherapy agents and is as effective. If necessary they bridge to the slower acting Cellcept with IVIG despite the cost. The goal is remission, not the maintenance regimens you see too much of. (All autoimmune disease should be treated to a goal of remission). The only time they use long term prednisone is when people come to them on it and can’t get off. I believe that prednisone is like much of what we use nowadays, it has valid short (and sometimes long) term uses but it has become grossly over used.
The hypothyroidism didn’t cause the MG or vise versa but they often occur together. I believe my MG was triggered by Simvastatin, and I don’t even have high cholesterol. The best I can tell, stress is the major driver, and not necessarily big stress, but lots of small stresses can make the disease worse. Drugs and chemicals react differently under MG, you have to be careful with magnesium for instance. Tried Westhroid and I’m not sure if there was an allergic reaction or an MG reaction but that was nasty.
Did you ever use the Thyroid Scale Matrix. It is a very interesting way of organizing and evaluating thyroid disease.
http://www.drrind.com/therapies/thyroid-scale
My TSH averages 2.0; FreeT3 3.4 pg/ml; FreeT4 1.1 ng/dL
I use 175 mg levo and 10mg Lio
Peter can I ask you, was it purely the Neuro doc who diagnosed your MG or did preliminary exams raise suspicion? I ask cos I mentioned it to my new gp today and he said I wouldn't have it because he performed a test whereby I had to follow his finger with my eyes, up and down repeatedly. He said my eyelids didn't tire quickly so ruled it out. Were eye symptoms predominant for you?
Thanks Peter, you make some excellent points. The link on interpreting lab results is great! I’ve long been frustrated at the complete lack of relative analysis of thyroid tests, as hormones are by definition relative and require proper ratios for health. The way this link explains things, makes ‘normal’ laughable, which of course, it really is.
I also agree about the use of meds for short term treatment. Only, I take that one step further and would add that thyroid medication should be used with short term protocols for most people, and the goal of remission. I love that approach!
I’ll send you a pm. I’d love to get your thoughts on some of the things that have worked for me.