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XMRV and hydrocortisone
I've been diagnosed with ME in 1995 and am now waiting for the results of my XMRV-test. In the meantime, I've received the diagnosis of Addison's and Hashimoto's. Test also showed I have RT3, so I should go on T3-only instead of T4. In order to do this, I have to address my adrenals first. My endocrinologist has prescribed my physiological doses of hydrocortisone for this. However, my ME-specialst told me NOT to take the HC, because the XMRV thrives on cortisol. Due to circumstances too long to explain here, I was kind of forced to go on HC anyway. I didn't have the opportunity to consult with my ME-specialist.
The aim is, to increase my dosage of T3 when my adrenals are kind of stable, I'm on a minimum dose of 12.5 Cytomel now and feeling very hypo of course.
The trouble is, that since I've been taking the HC, I've been feeling very sick: I had some kind of intestinal bug for about 3 weeks, a bad case of sinusitus for a week and now the tummy bug is there again. This sets me back every time, as I can't increase my T3!
I'm beginning to wonder if the HC isn't feeding the XMRV after all. Could you please comment on this?
Last week, I also got the diagnosis of lichen sclerosis on top of all this.
The aim is, to increase my dosage of T3 when my adrenals are kind of stable, I'm on a minimum dose of 12.5 Cytomel now and feeling very hypo of course.
The trouble is, that since I've been taking the HC, I've been feeling very sick: I had some kind of intestinal bug for about 3 weeks, a bad case of sinusitus for a week and now the tummy bug is there again. This sets me back every time, as I can't increase my T3!
I'm beginning to wonder if the HC isn't feeding the XMRV after all. Could you please comment on this?
Last week, I also got the diagnosis of lichen sclerosis on top of all this.
Hi,
Thanks for your reaction.
I'm sorry, but I don't agree with you. You CAN have the diagnosis of ME/CFS and anything else. I wouldn't like to feed the ME/CFS patients with a lot of other issues. You're saying you can't have a broken leg AND the flu. ;-)
I do think it's very difficult to distinguish between several illnesses, as so many symptoms correlate, and they all are in relationship to HPA-axis, hormones, immune system, etc. And there is no distinction, as we all know, not 2 ME/CFS patients are the same. I think it's better to treat the patient, going by his symptoms and lab results, than the illness.
There is no need for me at all to take T4, as I have a RT3 issue and don't convert the T4 to T3 properly. That's why I'm on T3 only.
I agree with you that taking HC can be harmful if you don't need it, but my whole point is: I DO need it, I have a solid diagnosis of primary Addisons's.
My question is however: what to do when you have Addisson's (and should be on HC) AND are XMRV positive?
If I'm not allowed to take HC, I can't take enough thyroid meds to function properly, because the thyroid meds are very hard on the adrenals.
It seems I'm stuck between a rock and hard place, and it would be so nice if some doctor could answer me.
I've tried contacting Judy Mikovitz, to no avail.
Thanks for your reaction.
I'm sorry, but I don't agree with you. You CAN have the diagnosis of ME/CFS and anything else. I wouldn't like to feed the ME/CFS patients with a lot of other issues. You're saying you can't have a broken leg AND the flu. ;-)
I do think it's very difficult to distinguish between several illnesses, as so many symptoms correlate, and they all are in relationship to HPA-axis, hormones, immune system, etc. And there is no distinction, as we all know, not 2 ME/CFS patients are the same. I think it's better to treat the patient, going by his symptoms and lab results, than the illness.
There is no need for me at all to take T4, as I have a RT3 issue and don't convert the T4 to T3 properly. That's why I'm on T3 only.
I agree with you that taking HC can be harmful if you don't need it, but my whole point is: I DO need it, I have a solid diagnosis of primary Addisons's.
My question is however: what to do when you have Addisson's (and should be on HC) AND are XMRV positive?
If I'm not allowed to take HC, I can't take enough thyroid meds to function properly, because the thyroid meds are very hard on the adrenals.
It seems I'm stuck between a rock and hard place, and it would be so nice if some doctor could answer me.
I've tried contacting Judy Mikovitz, to no avail.
Sorry to interrupt but you can't be diagnosed with CFS/ME if you have another explanation of your symptoms and addisons and hypothyroidism/hashis is another explanation.
Also, I'm from the UK and there isn't enough evidence yet that xmrv is the cause of cfs/me.
Other papers have not found it and even if it is there, it does not mean it is the cause.
If I were you, I would ask the members of the thyroid forums for their advice. You may be better with a mixture of T4 and T3 for example and may need a higher dose. I don't know about addisons, except I think they have dark skin. Be careful though!!!n Taking physiological doses of HC can stop your endogenous production of adrenals if you don't need it. I think the same goes for the thyroid. So, just be very careful that your diagnoses are correct , maybe get a second opinion. Hope this helps. don't worry about xmrv yet.
Also, I'm from the UK and there isn't enough evidence yet that xmrv is the cause of cfs/me.
Other papers have not found it and even if it is there, it does not mean it is the cause.
If I were you, I would ask the members of the thyroid forums for their advice. You may be better with a mixture of T4 and T3 for example and may need a higher dose. I don't know about addisons, except I think they have dark skin. Be careful though!!!n Taking physiological doses of HC can stop your endogenous production of adrenals if you don't need it. I think the same goes for the thyroid. So, just be very careful that your diagnoses are correct , maybe get a second opinion. Hope this helps. don't worry about xmrv yet.
Hi Patricia,
Thanks so much for your reaction.
Yes, I know the STTM-site and I've read all the information there. I'm a member of the related yahoogroups on RT3 and natural thyroid/adrenals.
Their point of view is, that when you need hydrocortisone, you need it, point. And if taken in physiological doses, it won't activate any virus whatsoever.
I've not been able to find a good dr to follow me up on this. My ME-specialist isn't very talkative and the endocrinologists I saw didn't "believe" in ME...
What you're saying about dr. Mikovits, kind of makes my fear worse... The fear that I'm not doing the right thing here. I'm trying to follow up on this, but I just can't find any info on this. I've tried writing to dr. Mikovits herself, but the institute answered that they don't answer any medical questions.
I'm a bit at loss here...
Thanks so much for your reaction.
Yes, I know the STTM-site and I've read all the information there. I'm a member of the related yahoogroups on RT3 and natural thyroid/adrenals.
Their point of view is, that when you need hydrocortisone, you need it, point. And if taken in physiological doses, it won't activate any virus whatsoever.
I've not been able to find a good dr to follow me up on this. My ME-specialist isn't very talkative and the endocrinologists I saw didn't "believe" in ME...
What you're saying about dr. Mikovits, kind of makes my fear worse... The fear that I'm not doing the right thing here. I'm trying to follow up on this, but I just can't find any info on this. I've tried writing to dr. Mikovits herself, but the institute answered that they don't answer any medical questions.
I'm a bit at loss here...
Hi Poetin. I have already been tested for XMRV, and I have tested positive by culture.l
I have suffered from ME/CFS since 1986, and I had thyroid problems, with Hashimoto's and Reverse T3 also--and of course, my adrenals were also messed up.
I got a lot of help for thyroid and adrenal issues from a website called Stop the Thyroid Madness. Although their forum is no longer active, there is still a lot of information there: www.stopthethyroidmadness.com In addition, some of the active members from there have formed a yahoo group, Real Thyroid Help, and they are doing excellent work: http://forums.realthyroidhelp.com
Through the assistance of these groups, I was able to locate and receive help from a good doctor. The main treatment she gave me was cortef. I ramped up the dosage slowly and then after 9 or 10 months I tapered off.
As I said, I also suffer from ME/CFS and I am XMRV positive. This is a very complicated condition, and I learn more every day. If you would like to find good information and good support for ME/CFS, you are welcome to come to the mecfsforums: www.mecfsforums.com
Dr. Mikovits, Dir. of Research at the Whittemore Peterson Institute, which discovered the connection of the XMRV retrovirus with XMRV, does say that hormones reactivate the XMRV retrovirus, so this is something you might want to follow up on.
I wish you the best with this. Please let me know if there is anything I can do to help.
Patricia Carter
I have suffered from ME/CFS since 1986, and I had thyroid problems, with Hashimoto's and Reverse T3 also--and of course, my adrenals were also messed up.
I got a lot of help for thyroid and adrenal issues from a website called Stop the Thyroid Madness. Although their forum is no longer active, there is still a lot of information there: www.stopthethyroidmadness.com In addition, some of the active members from there have formed a yahoo group, Real Thyroid Help, and they are doing excellent work: http://forums.realthyroidhelp.com
Through the assistance of these groups, I was able to locate and receive help from a good doctor. The main treatment she gave me was cortef. I ramped up the dosage slowly and then after 9 or 10 months I tapered off.
As I said, I also suffer from ME/CFS and I am XMRV positive. This is a very complicated condition, and I learn more every day. If you would like to find good information and good support for ME/CFS, you are welcome to come to the mecfsforums: www.mecfsforums.com
Dr. Mikovits, Dir. of Research at the Whittemore Peterson Institute, which discovered the connection of the XMRV retrovirus with XMRV, does say that hormones reactivate the XMRV retrovirus, so this is something you might want to follow up on.
I wish you the best with this. Please let me know if there is anything I can do to help.
Patricia Carter
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