ginab
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Posts: 47
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Post by ginab on Mar 4, 2009 23:18:37 GMT -5
I am really struggling to understand what the heck is going on with me right now. I've been doing T3, cortef, Florinef and more recently Armour, since about September. I have done very well for the most part. I have had a few days here and there where I didn't feel good, but overall I'm way better than I've been in 10+ years.
Currently I'm struggling with this constant headache. I typically have a migraine the day before my period and usually one when I ovulate. I had my normal 'pre-period' one nearly 2 weeks ago, but I've had this 'almost' migraine ever since then. It has been accompanied by an extremely tight muscle that runs from my low neck to my right shoulder, under my shoulder blade. Chiro says it's a trigger point, which I do agree, but nothing seems to help! Well, caffeine helps, but I was up until 2:30 this morning because I couldn't take it anymore and had just a little bit of caffeine!
Anyway, I was trying to find some migraine/bad headache info and found that it seems Florinef can give you bad headaches? Is this true? I am taking .1mg now, and have been for several months. I love my Florinef, so I'm going to be upset if it's the cause of this! I do 1/4 tsp salt water every day, usually twice a day. (That does not help the headaches by the way.)
I feel that my adrenals are supported quite well, as is my thyroid. But I still have some 'anger' issues - I get very mad very quickly. I found that progesterone/estrogen can do that, so maybe that is my problem?
I feel very lost, even though I have read tons of books and read these boards. I'm just not sure what to do next. Definitely something is off. But I can't find a doctor to help me figure out what that is!
And all of this on top of my kid's are suffering from hormone deficiencies too. And I can't get anyone to listen to me about them either.
Any help would be appreciated. Gina
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ginab
New Member
Posts: 47
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Post by ginab on Mar 4, 2009 23:21:42 GMT -5
I forgot something....
I have been wondering if maybe my adrenals are doing ok and maybe I'm now taking too much Cortef and that could be my issue.
Also, I sometimes am slightly hyperT, although not much. Temps are 98.6-99 most of the time.
Should I back down from the cortef and T3 for a bit to see if that helps?
Thanks! Gina
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Post by sallycinnamon on Mar 5, 2009 3:43:01 GMT -5
Hi Gina, I can't offer much in the way of hormone interpretation, but I know just how much the intense headaches can really hurt and just make you want to give up. I've recently started using Butterbur and Feverfew which migraine sufferers swear by in the reviews I read. It's helped me a lot - it hasn't completely eradicated them but they are much more manageable now. I want to get to the root cause though - I read today that low free testosterone can cause headaches in what is called female androgen deficiency. Of course, lots of other hormone issues will cause headaches too. I'm also on Florinef and might potentially wean....BUT I have had these scary headaches way before I started on any medication, so its difficult to work out. They happened after a bad crash when I went back to work and the brain strain and effort was too much. Have you got labs? Here's the Butterbur link....pretty cheap and beats popping liver-killing painkillers Have a read of the reviews. www.iherb.com/ProductDetails.aspx?pid=4208&at=0
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Post by Lethal Lee on Mar 5, 2009 6:18:34 GMT -5
HI Gina,
The fact that headaches happen at the time of cycle they do leads me to think it is Sodium/Potassium related. Progesterone is low at that time of month so Aldo hence Sodium/POtassium may be fluctuating some?
Have you tried adjusting Salt supping those days? When was the last time Sodium & Potassium levels were checked.
I dont have many cycles now & am on constant Progesterone HRT so I dont have those fluctuations to worry about. But in Aussie Summer (this years the worst in many) I have had to go up && down on Florinef as well. I usually am on 1 tab am & another 1/2 tab before bed. In heatwave weather I have to increase Florinef up ANOTHER 1/2 tab, Potasium supps up another 600mg & do more Salt supping too!!!
Then when the temps come down I have to adjust everything DOWN again.
Yes Florinef can cause headaches. Thats because it causes BIG changes in body fluid levels. Many Docs dont know how to start people up gradually, dont advise that split dosing suits some people better, forget about checking Potassium & supping with OTC or RX Potassium when needed, and dont tell people to do basic Sea Salt supping either.
No wonder they get side effects!!!
Often they dont perservere for a while to find right dose & timing & to allow sufficient time for body to adjust either. It can take a couple of weeks after settling on a dose to fully adjust. Nor do they bother with frequent testing of electrolytes which I consider ESSENTIAL initially until stable equilibrium is found.
And again Docs forget to advise that requirments for Florinef, Salt & Potassium may change with weather, physical activity & cycles!!!!!!
Sounds like most Docs know just as much about dosing Florinef as they do about HC!!!!! That is....not very much.
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Post by Lethal Lee on Mar 5, 2009 6:43:27 GMT -5
I forgot something.... I have been wondering if maybe my adrenals are doing ok and maybe I'm now taking too much Cortef and that could be my issue. Also, I sometimes am slightly hyperT, although not much. Temps are 98.6-99 most of the time. Should I back down from the cortef and T3 for a bit to see if that helps? Thanks! Gina AS to whether Hc & T3 are too high I cant really say. What I can say is that you are on a pretty hefty dose of T3 75mcg plus Armour 1 1/2grains? Usually 75mcg T3 on its own is enough for most folks. I do realise you are trying to swap back to Armour. I read you got up to 100mcg? Were you on T3 only long enough & at high enough dose to clear the RT3? Did you verify by retesting? It took me 4 months & I got up to 150mcg. Then RT3 cleared suddenly & went a bit Hyper (testing confirmed this). Got rid of Hyper symptoms by stopping T3 for a couple of days. I restarted on 80mcg daily & in fact in recent hot weather find I only need 60mcg (need less Thyroid Hormones in hot weather). So yes may well be on too high a combined dose. Also possible that adding back T4 has increased the RT3 again??? I have decidied to stay on T3 permainently due to my Amalgams/NMercury interfering with T4==>T3 conversion. & causing high RT3. As to HC dosing do you have any high Cortisol symptoms? I checked Labs on RTH but you didnt have ACTH Stim, nor Renin tested. You had Saliva Cortisol but no blood Cortisol levels. ACTH was tested twice & was low. The latter is suggestive of Secondary AI as is low DHEAS & Testosterone. Point is IF you are Secondary HC is for life. Adrenals cant heal as ADrenals were never the problem. The problem is with the pit & no known way to "heal" the Pituitary!!! Of course you MAY not be Secondary. Attempting to wean is up to you. If you cant handle lower HC or no HC you will have your answer. Personally I would stay on it!!! But I DID have full testing and know I am Hypopit/Secondary AI. You look as if you would benefit from DHEA HRT from your labs too. Have you considered it?
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ginab
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Posts: 47
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Post by ginab on Mar 5, 2009 10:38:00 GMT -5
My labs are at RTH... forums.realthyroidhelp.com/viewtopic.php?f=11&t=10128I've had migraines around my cycle since before I started my period! I started having migraines when I was 10 - about a year and a half before I actually started my period. They went away while I was on birth control pills. But of course those caused a host of other problems. I don't think Florinef is the cause of my typical headaches, but it may be for this 2 week one I've had. How do I adjust salt supping on migraine days? Haven't tested salt/pot in a while. My labs at RTH are the most current ones. It's on my list to do next. Just trying to find a doc to do it. I did start Florinef gradually. 1/4 tab every week until I got to 1 tab. Started it in October. I think it's been long enough, but maybe I'm wrong. I need to change my signature. I'm not on that much Cytomel any more. I'm actually only taking 37.5 mcg right now. I'm still doing the 90mg Armour. I was on the 75mcg Cytomel for 4 - 5 months. I have not retested. Current doc hasn't done it yet, although I know I need to. Like I said, I'm trying to find a doc to do all of that. Current doc is only 1/2 on board with stuff and will only do so much for me. I don't have any high cortisol symptoms other than getting extra angry. Of course, that could be something else since many symptoms overlap. That's what I'm trying to determine. Generally, I feel fine. It's just the last couple of weeks and this stupid headache! I know there are other things that I haven't figured out yet. Progesterone/estrogens are low. I know DHEA is low. I just don't have a doc that will 'oversee' me adding these things. And I've just been trying to get thyroid/adrenals straight for the last few months, and I didn't want to do too many things at once. So, my plan is to lower HC for a few days to see what happens. I think thyroid is ok for now, but I have been taking 12.5mcg out every week or two. Seems to be ok at this point. I just wish I had a doc that would listen! Tried a new one yesterday. Complete waste of time. I even got my copay back because it was that much of a waste of time! Trying to find a doc that takes my insurance, and well, I'm thinking that's just not possible. I don't have a ton of money to do all of this. And my kids are also affected by this and my husband, so it's going to be expensive to get all of us fixed. Trying to do me and my middle son first, since we are the 'worst' off. I just appreciate this board and all the knowledge here. Just knowing someone else out there knows what I'm going through is comforting. Thanks, Gina
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Post by verbal0rchid on Mar 5, 2009 14:26:01 GMT -5
I've had migraines around my cycle since before I started my period! I started having migraines when I was 10 - about a year and a half before I actually started my period. You're the first person I've heard with similar experience to mine. My migraines started around age 12, and i started menstruation at 14. I could never take the pill because of the migraines. No doc would approve the use.
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ginab
New Member
Posts: 47
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Post by ginab on Mar 5, 2009 18:40:19 GMT -5
I started on the pill when I was 17. My cramps were unreal so I finally went to the doctor when I was 15. I would miss 1-2 days of school because I was in so much pain from cramps. Not to mention the migraines! They wanted to put me on the pill at 15 but I refused! I didn't want to be labeled a 'bad girl' just coz I was on the pill! I finally caved when I was 17 because I had tried everything else during the previous 2 years and nothing worked. I took them for 8 years straight, then got off of them for a while. I tried to take them again a few times and they just made me feel awful, so I just quit. I haven't taken any in years. I'm glad too, coz they just mess you up! But I didn't have many migraines while I took them. I don't recommend taking the pill for migraines though!
Thanks! Gina
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