Even though your serum cortisol was in range, that does not mean adequacy. Serum cortisol is total cortisol. Like with the Totals and Frees of thyroid testing, the most revealing test is for Free cortisol There is a serum free cortisol test that should be done in the early morning. Even better would be a diurnal saliva cortisol panel of 4 tests done at different times of the day. Not sure if that test would be available for you.
Among other things, joint pain such as you mentioned can be associated with low cortisol and also inadequate tissue thyroid effects. From what I recall of your test results, your thyroid levels were adequate, so the only thing in that area that might make sense would be Thyroid Hormone Resistance, which is not a common problem. So that leads me to wonder about cortisol.
After looking back through that older thread, I wondered if you had discussed the cortisol test results with your doctor? Your symptoms make me think of a possible low cortisol problem.
Sorry to hear that you are still having all those problems. What are your latest test results and reference ranges for Free T4 and Free T3 and Reverse T3 (if tested)? Also, Vitamin D, B12 and ferritin. Have you been tested for cortisol?
Thanks the suggestion. I was severely Vit D deficient but the levels have come up to normal now. As far as I'm aware they have not tested for Magnesium so I will ask the question. I can't even get my free T3 tested routinely so I may be knocking against another brick wall.
Thanks again to everyone for the advice.
I have Graves' and have been having aching muscles and spasms a lot. Sometimes while working out I will start cramping up and the next day it's awful. I read that many thyroid patients have low magnesium. I just started taking magnesium and vitamin D today. You might want to research this or ask you doctor.
Hi yes I have read the link you sent by the personal trainer and it explains exactly what is going on! I have to get to grips with the Krebbs cycle, it's been a long time since my brain had to comprehend this! I also find it really difficult to have a reasoned debate with any consultant as my brain turns to mush in their presence!
It's interesting what you say about Datis K book, I shall look at it more objectively now!
Thanks so much for all the support, I really do appreciate the advice...
I am familiar with the book you mention, chisit. I have read it and find so many holes in the theory and treatment protocol that I have little to no respect for it. One of the basic premises of the book is that gluten antibodies escape through a "leaky" intestine and "attack" thyroid tissue because it is "similar" to gluten, thus giving rise to Hashi's. Another premise is that everyone with Hashi's should be on a gluten-free diet, and that K can "cure" Hashi's by sending antibodies into remission. Neither of these premises has been backed up by any scientific study. I found the book to be an infomercial supporting K's practioners thoughout the country and the treatment products, many of which are only available through him.
There is an ongoing discussion that you might be interested in related to the Hashi's/gluten connection and touching on K's book that you might be interested in reading:
http://www.medhelp.org/posts/Thyroid-Disorders/More-research-connecting-gluten-to-thryoid-disease/show/1284972
This thread reflects many of our members concerns regarding the legitimacy of K's theory and methods.
ggma1000, I agree that almost no book is totally devoid of some gem of wisdom, but I have say that this book was about as close as I've seen one come.
chisit, have you read the thread in the link I posted above? The person who originated the thread explained the link between THR and muscle pain quite well.
My personal experience with Lupus since 1955 (serious malar rash & sun sensitivity, etc.) is that with a radical change in diet, a LOT of things get better, including autoimmune functions. I went from a junk food junkie, who would get so sick very often, to a health food nut, starting about 1980, who seldom got sick. So much improved, that at 80, in a flare, I have felt better than at 40.
This flare (Hasimoto's) is a new one for me and I am still learning...expecially from posters such as you, goolarra, but also others who have other opinions. I gather information from many sources, including Dr. Kharrazian's book (some of what he says explains the vast difference of symptoms I have from what my husband had & is getting again). We all have to do "due diligence" but I find that sometimes I can learn a little something even from some of the sales sites...just don't buy. I've also been able to get in to sites meant for MDs. I got interested in nutritional supplements from my dentist whose wife is a pharmacist.
My middle son was tested (in 1981-2) by a doctor (metabologist, histologist & hematologist...used to teach at Baylor U. Med S) when he was in middle school. She told me that she only found one set of deficiencies which pointed to a single disease...that was heart disease, but all diseases could be caused by completely different deficiencies in different people. She explained that average daily requirements of nutrients made as much sense as an average shoe size for infants to giants, and that some babies are born with such deficiencies that could never be corrected with food alone!
That is one reason why I keep an open mind, and was glad that I grew up in a multi-generational household where different diet restrictions were catered to. Makes it easier for me to do the same now for the 2 of us.
Peace, ggma
The rational is that I am unable to convert T4 to T3 adequately as it never made me feel any better even up to 175mcg a day of Thyroxine, I've been on combined Thyroxine and T3 and also Armour with T3 still with no improvement..... so bypass the need to convert and go straight to usable T3?
When I say no improvement I should clarify that it's the muscle problem and fatigue that don't improve, all the other hypo symptoms have.
The guy I mentioned that thinks we should be attacking the autoimmune function is Datis Kharrazian. His book is titled "why do I still have thyroid symptoms when my lab tests are normal" the website is www.thyroidbook.com. It makes very interesting reading, sort the underlying problem i.e. the autoimmune attack.....I have tried many of the suggestions but with no support from a practitioner as there is no one in the uk who thinks this way.......
Intolerance of T4 meds is a symptom of RT3 dominance. In fact, the whole RT3 dominant reaction snowballs the more T4 you take. The more T4 you take, the more lopsided the balance becomes between FT3 and RT3, since more and more is converted to RT3. However, as Moose said, it's usually fixed by temporarily taking T3-only for a few months. How long have you been on the 45 mcg?
I don't know what you've been reading about treating autoimmune disease. There are some experimental protocols out there, but in accepted medical practice, there is no way to treat the antibodies. Once you have them, you have them for life unless your thyroid is removed or "dies", in which case they can go into remission.
Taking T3 only is unusual. What was the doctors deciding point is going that route?
That is the way Reverse T3 is treated, with T3 med only for a few months.
I don't take any T4 as it never made me feel any good, and for a long period over stimulated even when only on 25mcg a day. I've tried Armour (before it was reconfigured) and Nature Thyroid. All the research I've found by Dr John Lowe on hypothyroidism and fibromyalgia points to T3 being probably the best solution.
I can't find anyone in the uk prepared to consider peripheral resistance being the problem, it's exasperating!
I've read some really interesting stuff on treating the autoimmune pathway which seems to make most sense seeing that it is this causing the attack, but once again no one will listen.
I totally read over how much T3 your on - like goolarra said, 45mcg is a lot! That would put most past the upper free T3 range.
How much T4 are you on?
You might be interested to check out this thread on peripheral resistance:
http://www.medhelp.org/posts/Thyroid-Disorders/Thyroid-Hormone-Resistance/show/1202364?personal_page_id=287727#post_5499329
The woman who posted it obviously had an extreme case. THR (thyroid hormone resistance) can be an issue even if the FT3 levels don't have to be as high as hers were to feel good. 45 mcg of T3 per day is a large dose of T3. Do you take that alone, or in conjunction with other thyroid meds? It would be very useful to see your FT3 levels. If they are quite high, then THR would definitely be something to look at more closely.
Thanks so much for the responses. I will have to request my full results, we don't get given them automatically in the UK.
"Could it be that I am experiencing peripheral resistance to thyroid replacement on a cellular level or that I have perhaps damaged muscles by pushing them to do too much exercise whilst not having adequate hormone replacement?"
Possibly.
I wish there was some research in this area. T4 only with Hashimoto for years caused me to lose muscle mass, strength and the ability for muscles to recover from simple activity let alone working out. After 9 months with T3 (dessicated) I started to regain strength and was able to ski pain free for the first time in years. That med was discontinued so I had to start all over on another brand. I had to severely reduce physical activity again, getting slowly better. It is my opinion that some people do get permanent tissue damage from hypo. Nueologist are unable to explain it as most tests are negative, but they test nerves, not muscle! - that is the difference.
And the whole thing about thyroid hormone resistance does not mean you are unable to achieve proper lab levels - it means your T levels might have to be higher to have a positive effect, if any.
Free thyroid levels are just the amount of hormone available for use floating in your blood, it does NOT mean your cells are actually absorbing the hormone. Just because an old car has a full tank of gas does not mean the engine is getting it.
The wost part of all this is its a waiting game.
Post your labs. Free T3 might help in the upper third of the range. Although tsh is not the best to go by, yours could come down more - that might make the difference. Been there.
Have you had your Free T3 tested? I have no thyroid anymore due to cancer but I did have Hashimotos prior to surgery. I'm no expert on the numbers here since I'm still learning after 3 years. But here's what I DO know. I'm a long distance runner and an avid gym goer. After my surgery I was placed on synthroid only. For two years I felt the way you describe, like my muscles just ached all the time. I finally asked for my Free T3 to be tested and what do you know? Yeah, it was low. Way low. I started on Cytomel with my Synthroid along with a magnesium supplement about 3 months ago and I feel so much better. I was also severely low in Vitamin D. It took an entire year of prescription Vitamin D to get my level in the normal range. With all these things coming into the "normal" ranges I'm finally starting to feel human again. I'm able to do hard workouts now without after effects. I don't know if any of this helps but I know how you feel.