Pat this is such a hard one ,l have been on this ride for years and so far have not found either an exit or a better conductor.Or is it a case of what came first the chicken or the egg?.

My fatigue is is no doubt related to my lack of thyroid and my inability to uptake the meds given to me (l take Eutroxsig).l do see an Endocrinologist who so far has not been able to figure out why l don't absorb replacements.

l look at other indicators for mg based fatigue,my speech ,swallowing,can l brush my teeth?,eye function.Instead of the general all over blah feeling.l'm sure they intermix,but l find that my family are better picking up the mg things better than l am,whereas l'm more alert to the general blah.(my facial expressions are a huge indicator to mg that l do not always notice.or should l say lack of).

l wish l could tell you.....tell you what ,when l find out l will let you know and vice versa.

I too have Hashimotos and also Raynauds and neuropathy which all can cause cold extremities For me Raynaud's comes on with a sensetivity to cold. My Hashimoto's when low can cause chills, and low overall body temperatures. When I recently had a TSH of 11.6 I felt slow of thought and slow in motion. It was like going through life in slow motion. Low thyroid can effect a lot but for me it is an overall total body thing where as with my muscle weakness it is a fatiguability.Having both at once for sure is a double whammy and can render one quite ineffective at daily tasks.

I have both low T4 and low T3. Some people do not convert their T4 well to T3 and I have been this way for about 8 years now. When I first was diagnosed with Hashimotos I was 20 years old and it had caused a heart murmur and hearing problems that reverted with tx. Then I started not converting well and we added the liothyronine. I do note when my thryroid is low I get longitudinal lines in my fingernails and dryer skin plus thin outside edges of eyebrows. Other things of course may also cause similar symtpoms.

Mine seems to fluctuate somewhat with the season so I had a TSH of .04 one June and recently had 11.6. IT is checked every six months or if we suspect something is off. If your pharmacist changes the company or type of medication you may need a re test to see how your levels are. Usually now we can just check the TSH and if it is off test the T3 and T4.

Endocrinologists and doctors seem to be in two camps. One believes in getting the numbers in the normal zone then tweaking by patient symptoms. That type of doctor would raise it slightly if you were still having symptoms and your TSH was not at the top of the box. Most people seem to feel better with the TSH in the upper half of the range but some feel better with it lower.Likewise some people get results from the synthetics and some the amour and some have trouble finding good absorption.

My thyroid is under reasonable control right this minute but was not just two months back. I think sometimes it is hard to pick out what is causing what but generally my thyroid is an overall lower temperature, fatigue that is all encompassing while my muscle weakness at least for me seems to be in systems that vary. I recognize my breathing weakness and my arm weakness and leg weakness or neck weakness as being different from low thyroid over all fatigue.

With low thyroid I may have trouble finding words and thinking on a general every moment of the day level. I have heard people talk of this with MG but more as an episodic event. With muscle weakness my systems wane in and out through out the day depending on taking my pyrido and time of day and activity.

Not sure if this helps at all but it has been my experience. That is unless I have a medication that competes for acetylcholline that I have taken and it hits all at once. Still I do have fluctuations during the day, worse as the day goes by. With thyroid you get an effect that colors huge blocks of time over weeks. Again that is my experience and others may have had different ones.

With Raynaud's I may get a piece of me going cold and numb like part of a hand or a finger. With low thyroid I get larger parts of me effected and all over lower core temperatures.

I hope you can find resolution.I hope most of all that you can have a doctor who you feel comfortable with who listens to your symptoms and looks for answers. Let us know how it goes....Marie

Hi Pat,

You are living in my world. I was diagnosed with Hashimoto's 10 yrs before my MG diagnosis. I've seen my endocrinologist regularly since my diagnosis. It is incredibly difficult to tell the difference between the Hashimoto's and MG sometimes. It's certainly a learning experience, if you can ever figure it out.

The fatigue is a huge issue though and generally speaking, my endocrinologist tries to keep my thyroid levels a little on the hyper side of normal. I take armour thyroid and synthroid, partly because I had the left half of my thyroid removed in 2002 and I don't do well on synthetic medication.

If you have more specific question that I might be able to help you with, please feel free to send me a message.

I hope you start to feel better soon.
Aloha,
Angie

Thanks so much for your comments and sympathy! I decided to try to get another opinion and have started the process to see a different endocrinologist. And, it might just be all MG... All I know is that I feel worse than I did last fall. I'm cold, fatigued, and sleepy in the evenings, and I'm having more hip pain, arm weakness, and double vision. It would be nice if I could get some improvement in the first set of symptoms with an adjustment to my thyroid medication...And, maybe I need an increase in mestinon as well...

Jimmijane--I love your comment about having not found either an exit or a better conductor!

Marie--I've wondered whether I have Raynaud's on top of everything else. For years if not decades, my hands have been very sensitive to cold. Running cold water over them is very painful! I tend to warm up the water a bit to even do something like washing vegetables and fruit. I've never had my T3 tested and plan to ask about that when I see the new endocrinologist. I do have problems finding words and names, but what bothers me more is making more typos, even when I'm writing something with a pen...

Angie--Thanks for your comments and your offer to help with specific questions. I'll definitely keep that in mind!

One more question for all of you--when your thyroid is not well controlled, do you have more MG symptoms, or do the two seem to be unrelated?

Thanks again and blessings to all of you! -- Pat

TSH alone is not an infallible indicator for my thyroid levels. I had a complete thyroidectomy in 2008, and have been on this ride even before this.. My TSH can be completely in normal range and T3 will be too low. I am convinced that I cannot convert T4 to T3 ( the usable form) and did not respond at all to synthroid.
Even another form of natural thyroid, when Armour was not available , , was ineffective.
I have , as of yet, to figure out the triggers for me that cause fluctuations of these levels, but when they do fluctuate, my Myasthenic symptoms definitely flare. Each time I have had extreme weakness resulting in hospitalization, the thyroid levels have been off.

The only thing I can think of is that with the variability of digestive issues ranging from constipation to frequent diarrhea, maybe the medication is not being absorbed at the same levels because of this.

I feel best when my temp is closest to 98.6, but usually run anywhere from 95.6 to 97.2. Nowadays if I have 98.6, it's a fever for me.
Unfortunately, my doctor looks at TSH only, so I usually stay mildly hypo and it stinks. I am reluctant to get a new doc, because most wouldn't even hear of letting me try Armour, which was a life saver for me.

I got an appointment today for March 31st with a different endocrinologist. Being the eternal optimist, I'm really hoping my experience will be better. limpnoodle, I know exactly what you mean--my current endocrinologist only looks at TSH as well. I'm really hoping the new doctor will treat my symptoms rather than my TSH!

I find that keeping my ferritin mid-range helps with my thyroid dose effectiveness. And I felt much better taking my dose mid-afternoon, a trick my grandfather used too, to have energy in the evening. I had to try these tricks as my family doc wouldn't increase my dose while waiting for my MG referral.

Interestingly, I felt so much worse this fall when my TSH rose quickly. When my doc finally increased my dose I felt better in 48 hours.

flutebell--thanks for your post. Maybe I need to have my ferritin tested as well. Do you have problems with fatigue in the late morning-early afternoon with taking your thyroid medication mid-afternoon? If you don't mind me asking, what was your rise in TSH last fall that had you feeling worse? My TSH went from 2.78 in September to 3.59 a couple weeks ago. -Pat

Wow, I've never heard of an endocrinologist that only treats the TSH. That's absurd given the ease of testing the other components (T3, T4, Free T4 and Free T3, etc)

My MG symptoms do flare when my thyroid level is off in the slightest. My endocrinologist has me on Synthroid and Armour Thyroid because there was no response to Synthroid alone. I use to be freezing cold all the time and now (thanks to prednisone) I sweat all the time which is the worst for me. My endocrinologist tends to keep me slightly on the hyper side because otherwise my T3 and T4 get way out of range. I just have to be cautious because having your thyroid over active can cause severe osteoporosis. It took me almost 6 years to stabilize my thyroid levels and now I have a balance between all levels that is as good as it's going to get.

Are you guys taking your medications on an empty stomach? Do you ever eat grapefruit, which can make your thyroid meds (and lots of other meds) completely ineffective? I take my thyroid meds just before going to bed to be sure that they will be taken on an empty stomach.

I hope that you guys can get a good balance for your thyroid disease. Mine isn't perfect but it's as close as I'll ever get I think. I would change endocrinologists immediately if all he/she wanted to test and treat was the TSH. This is a huge disservice to your medical needs and overall care. I think it's very irresponsible too.

Anyway, keep us posted because I'm interested to know what the new doctor has to say about it all.
Aloha,
Angie

In the UK they treat on TSH (T4 and T3 if toxic). I was diagnosed with Hashimotos twenty one years ago. I started on 100 micrograms but eventually increased to 150 micrograms - I think 2-3 years after diagnosis. As I mentioned on another thread, I was very ill by the time they diagnosed me and my fT4 was 30 (normal range 0.4 to 4.5). Since I have been on treatment I have had no issues. I have my blood checked every 12 to 18 months.

Sorry that last post missed a chunk out :/ - it should have said:

In the UK they treat on TSH (T4 and T3 if toxic). I was diagnosed with Hashimotos twenty one years ago. I started on 100 micrograms but eventually increased to 150 micrograms - I think 2-3 years after diagnosis. As I mentioned on another thread, I was very ill by the time they diagnosed me. My fT4 was 30 (normal range 0.4 to 4.5). I was suicidal and my doctor was on the point of sectioning me - until he saw my blood results. Since I have been on treatment I have had no issues. I have my blood checked every 12 to 18 months

I think the forum messes up posts that use symbols :( Trying for the third time...then I give up!

In the UK they treat on TSH (and T4 & T3 if toxic).

I was diagnosed with Hashimoto's twenty one years ago. Following diagnosis, I started on 100 micrograms but eventually it was increased to 150 micrograms - I think 2-3 years after diagnosis.

As I mentioned on another thread, I was very ill by the time they diagnosed me and my fT4 less than one (normal range 11 to 28) and my TSH was greater than 30 (normal range 0.4 to 4.5). I was suicidal and my doctor was about to section me - had he not just opened my lab results. It's not called 'myxoedema madness' for nothing!

Since I have been on treatment I have had no issues. I have my blood checked every 12 to 18 months.

Fingers crossed it works.....

I should add that my GP (PCP) manages my thyroid - I've never seen an endocrinologist.

I have extreme tiredness now but I know its not my thyroid as I have been stable on full replacement dose for nearly twenty years. I'm assuming its the MG - or "whatever it is that I have".

My TSH was 2.0 in July and 5.1 in October when I was very ill. I had been running 3.5-4.5 for years. The upper threshold in Canada was 5.0. This fall it was changed to 4.0 so my 50ug dose was increased to 75ug.

I am a morning person and always have more energy then so I do okay with an afternoon dose. When I was taking it very early in morning I could barely drive home from work! Now I have energy to go out to evening music practices. I take a lot of medications at night and eat a big bedtime snack so mid afternoon was the only time I have an empty stomach.

I always take my thyroxine at night (though it does say on the label to take in the mornings). TBH I have never really noticed a difference - the biological half life of levothyroxine is 4 to 7 days so a few hours, in theory, shouldn't make any difference to clinical symptoms. I take mine at night simply because I'm rubbish at remembering meds (unless I'm in pain ;) ) - so I take everything (warfarin, omaprezole, amitriptyline, co-codamol and thyroxine) at bed time - the old KISS maxim :)