Cpnhelp.org

Hi, Mark~~ (Glad Paula was doing a bit better last night..... :) )  I've not seen that many urine thyroid test results, but just comparing her numbers to the reference ranges appears she is low in both T3 and T4.  Oh, boy something more to add to the mix but this could definitely contribute to fatigue and low body function. 

 Additionally, an adrenal test could/should be done because if her thyroid's not working properly then her adrenals are probably stressed as well.

Iodine (Iodoral) could help, but with Paula I'd start very, very low (half of a 12.5 mg tablet??) 

I'm sure others will comment as well.

JeanneRoz

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JeanneRoz~CPNi diagnosed & started protocol 4/2007, also HHV6, EBVi. CFIDSi/FM diagnosed: 6/07; 100mg/doxyi/BID ~ 250 mg AZITH M/W/F ~1st Tinii pulse 4/17/08- 1 250 mg. tab for 2 days. Pulse 5: 9/28/08, 250 mg TINI BID, 3 days. Sup

Hi Mark,

I ditto what Jeanne says about the adrenal function.  In fact, the adrenal stress could be causing the low thyroid function, according to how Dr Powell describes his hibernation theory.  

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NACi 2.4g, Zithi 250mg/MWF, minoi 200mg, Tinii 5day/1g/5 pulses, Valcyte
Iodoral 12.5mg, Supps, CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Sec Addisons

Thanks JeanneRoz & Reenie.  We have a saliva adrenal test kit here and plan to do it next week.  Once we have the results from that too, we will arrange a telephone appt. with Dr AW and see what he can suggest Paula take to supplement her thyroid problem.

Does anyone have any results from the natural supplement Kelp as we already have some of that in the house?

Mark

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UK Carer of bedridden Severe CFS Feb06. Tick bites Summer04.  CPNi dx.Apr07. Borrelia dx Sept08. Samento 15 drps daily July07.  200mg Doxyi Jan08.  300mg Roxy Apr08 Stopped abxi Nov/Dec08. Building up on Supps again.

Mark, I don't see a test for Free T3 vs Reverse T3. If she has any thyroid deficits at ALL, correcting with supplementals could make a HUGE difference in her energy levels. And promote overall healing of the body. It is difficult to find someone who knows all the thyroid tests. I agree with Jeanne that giving Iodoral a try would be a good move for her.

And you, Mark, need some help in coping with all this. Is there someone who can help out so you can get a day off now and then? Please take care of yourself. A burned-out caregiver is not what you want to be. Let us know.

Hang in there,

Raven

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Feeling 98% well and going for 100! Still testing + for Cpni since June '08.CAPi since 8-05 for Cpn and Mycoplasma P. for MSi and/or CFSi. Also EBVi and HHV6 NACi, Iodoral, T3, BHRT, Methylcobalamin injections, Nitro patch, LDNi and Methylation supplementsi

I agree about the Iodoral.  I am gonna make an appt. to speak to Dr AW and ask his opinion.  Where is it best to buy Idoral from - what type? 

I normally buy the abxi and Chole from edrugnet.com.

I found Armour here http://www.edrugnet.com/showprice.asp?name=thyroid&bysearch=ok

Is this ok?

Don't worry, if I buy any, I won't be giving any to Paula without more research and advice from Dr AW.

Out of interest, does anyone (who lives in the UK), know if this is available on the NHS, as I want to try to persuade Paula's NHS GP to perscribe it to save costs? 

Mark

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UK Carer of bedridden Severe CFS Feb06. Tick bites Summer04.  CPNi dx.Apr07. Borrelia dx Sept08. Samento 15 drps daily July07.  200mg Doxyi Jan08.  300mg Roxy Apr08 Stopped abxi Nov/Dec08. Building up on Supps again.

Mark~  first of all I agree with Raven, please be sure to take care of yourself as well :).  

"THE" Armour thyroid used by most here in the States is made by Forest Pharmaceuticals and you cannot get it shipped to the UK (why I don't know).

The link you are showing is generic thyroid which I have no experience with.  I belong to a thyroidless support group and we have many sources (such as we do here on CPNhelp) to buy thryroid supplementsi.  I, personally, would recommend Naturthroid instead as it is the closest (ingredient-wise) to the real Armour.

Kelp is "okay" but Iodoral is better.  Iodine is needed by the whole body  (even if you are taking thyroid meds).

Since Paula is so sensitive to everything here is a link showing the ingredients of the various used thyroid med's.

You can order the Naturthyroid  from a site I am sending you via a private email.  This is a link that several of us here have ordered Iodordal from (not sure if they ship out of the U.S., but they are very reputable and fast).

https://vvv9.com/iodoral/?gclid=CNyjo_XZmpcCFQwNGgodIzpICQ 

I hope this helps some... 

take care and say hello to Paula

JeanneRoz

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JeanneRoz~CPNi diagnosed & started protocol 4/2007, also HHV6, EBVi. CFIDSi/FM diagnosed: 6/07; 100mg/doxyi/BID ~ 250 mg AZITH M/W/F ~1st Tinii pulse 4/17/08- 1 250 mg. tab for 2 days. Pulse 5: 9/28/08, 250 mg TINI BID, 3 days. Sup

Thanks JeanneRoz.

I look forward to the email.

Mark

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UK Carer of bedridden Severe CFS Feb06. Tick bites Summer04.  CPNi dx.Apr07. Borrelia dx Sept08. Samento 15 drps daily July07.  200mg Doxyi Jan08.  300mg Roxy Apr08 Stopped abxi Nov/Dec08. Building up on Supps again.

Is it worth trying the Kelp in the meantime anyway, do you think?

Thanks, 

Mark.

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UK Carer of bedridden Severe CFS Feb06. Tick bites Summer04.  CPNi dx.Apr07. Borrelia dx Sept08. Samento 15 drps daily July07.  200mg Doxyi Jan08.  300mg Roxy Apr08 Stopped abxi Nov/Dec08. Building up on Supps again.

Mark~  I've not tried Kelp... and am not sure how long it would take to feel the effects... but perhaps it wouldn't hurt to try it.  Kelp supplementsi are different than Iodoral but this was stated about it :

"By regulating the thyroid, Kelp helps stimulate and balance the metabolism. The large amounts of iodine found in Kelp are important in the treatment of an under-active thyroid. Consequently, Kelp may contribute to weight loss if the weight gain is directly related to thyroid disorders."

 Link

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JeanneRoz~CPNi diagnosed & started protocol 4/2007, also HHV6, EBVi. CFIDSi/FM diagnosed: 6/07; 100mg/doxyi/BID ~ 250 mg AZITH M/W/F ~1st Tinii pulse 4/17/08- 1 250 mg. tab for 2 days. Pulse 5: 9/28/08, 250 mg TINI BID, 3 days. Sup

Mark, this is where I order my Iodoral from.

https://vvv9.com/iodoral/?gclid=CIX6y8qNm5cCFQ7aDAodbiidJA

See if they ship out of the country. If you look on Google, you will find other people selling it online.

Here is the link for the company that manufactures Iodoral in the US:

http://www.optimox.com/pics/Iodine/opt_Iodoral.htm

Good luck,

Raven

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Feeling 98% well and going for 100! Still testing + for Cpni since June '08.CAPi since 8-05 for Cpn and Mycoplasma P. for MSi and/or CFSi. Also EBVi and HHV6 NACi, Iodoral, T3, BHRT, Methylcobalamin injections, Nitro patch, LDNi and Methylation supplementsi

Thanks Raven.  I think it is always best to use suppliers that are recommended by people here on cpnhelp.  I'll have a look into it when we speak to Paula's doc.

Mark

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UK Carer of bedridden Severe CFS Feb06. Tick bites Summer04.  CPNi dx.Apr07. Borrelia dx Sept08. Samento 15 drps daily July07.  200mg Doxyi Jan08.  300mg Roxy Apr08 Stopped abxi Nov/Dec08. Building up on Supps again.

Armour is not available on the NHS unless you can get your doctor to prescribe it for her on a 'named patient basis'.   See this sites FAQ for explanation.   If you have to pay for it you might buy it online at edrugnet.

Here is a link to dosage advice. From my research, this is sometimes available in grains and sometimes in mg.   Armour 1 grain equals 60mg.   If a patient is prescribed 100mg of levothyroxine that is equal to 1 grain of armour or 60mg.

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Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse. Zoo keeper for Ella, RRMSi, At worse EDSSi 9, 3 months later 7 now 6.5 Wheldon CAP 16th March 2006

The Armour on the edrugnet website you listed is "generic" per se... not the original made by Forest Pharmaceuticals and available here in the US even though they are calling it "Armour".    I have the links for most all sources where thyroid can be purchased on the Net of which edrugnet is included; but, I order the real stuff from a different pharmacy on the internet when I have to. 

Levothyroxine is synthetic and totally T4... the belief is that the liver "converts" it to the body's need for T3.... people's bodies are different and it doesn't always convert or give us what we need.... Armour has T1,T2,T3, AND T4.  Most dr.s' and endo's love the synthetics because they believe they have better control of the patient's levels using it because most  only test TSH which isn't to whole picture.  

Also, taking T4, or any synthetic, for long periods of time will put additional stress on the adrenals.  People get misinformation believing that Levothyroxine and Armour are the same and they are not.....

IMHOi, with Paula being as sick as she is, she would be SOOOO much better off using the natural if she needs thyroid supplementation (regardless of what the UK doc's may think, as I understand they totally disrespect the whole CFSi illness and don't believe in Armour or natural thyroid -- just what I've been told).

I also sent Mark a link where the real Armour can be purchased, but they are not able to ship it to the UK. Additionally, that is why I gave Mark the link with the ingredients so he could be sure that what he purchases doesn't have anything in it that Paula may have a reaction to.   

For what it's worth... :)

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JeanneRoz~CPNi diagnosed & started protocol 4/2007, also HHV6, EBVi. CFIDSi/FM diagnosed: 6/07; 100mg/doxyi/BID ~ 250 mg AZITH M/W/F ~1st Tinii pulse 4/17/08- 1 250 mg. tab for 2 days. Pulse 5: 9/28/08, 250 mg TINI BID, 3 days. Sup

Here is some further information about the genereic thyroid preparation available at edrugnet.   The problem that we have in this country is that doctors will not prescribe it. Even if they will prescribed it for a patient on a named patient only basis (which is very unlikely - we have tried for Ella) there is then the problem of finding someone who will obtain it for us at a reasonable price.

So online supplies are often the only source available to us...

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Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse. Zoo keeper for Ella, RRMSi, At worse EDSSi 9, 3 months later 7 now 6.5 Wheldon CAP 16th March 2006

Thanks Michelle and Jeanneroz for all the info.  I have a bit of reading to do.

I am going to try to make a phone appt. with Dr AW and will also ask him, but in the meantime, I want to deal with the B12 injections issue first.

Thanks again.

Mark

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UK Carer of bedridden Severe CFS Feb06. Tick bites Summer04.  CPNi dx.Apr07. Borrelia dx Sept08. Samento 15 drps daily July07.  200mg Doxyi Jan08.  300mg Roxy Apr08 Stopped abxi Nov/Dec08. Building up on Supps again.

Michele~ I do understand the situation in the UK (I went back and reread my email... perhaps the tone may not have been conveyed as I meant it).  I empathize with the situation  there --   it is totally unfortunate. 

The link you provided is the same one I posted re the ingredients for the different thyroid products available.  I know I can't take anything that has talc in it (Aleve is one of them, which has been recommended on this site for inflammationi), so knowing the ingredients is helpful.

Mark is very careful and thorough... I am sure he will do what's best :)

JeanneRoz 

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JeanneRoz~CPNi diagnosed & started protocol 4/2007, also HHV6, EBVi. CFIDSi/FM diagnosed: 6/07; 100mg/doxyi/BID ~ 250 mg AZITH M/W/F ~1st Tinii pulse 4/17/08- 1 250 mg. tab for 2 days. Pulse 5: 9/28/08, 250 mg TINI BID, 3 days. Sup

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Wife with CFSi/FM/REYNAULD'S 15YRS Lab positive for CPni/HHV7&11/EBVi. Son 17yo with FM 3yrs- both on all supplementsi since 8/08 Started CAPs per Strattons modification (clindy/pyruvate/doxyi) started 11/17/08

Jeanne,

FWIWi... I was put on Armour once and my body treated it just like it treated my own thyroid hormone; it didn't work due to the thyroid antibodies my own body created to attack my own thyroid gland.  

I NEED a synthetic thyroid hormone in order to get any good effect from it so I take a combo of Synthroid for T4 and Cytomel for T3.  Drs often do this for people either sensitive to the Armour ingredients since it does come from an animal and many of us have reactions to many chemicals and agents just like you stated about talc.  

Thyroid hormones are not often a "one size fits all" fix.   This may be something Paula will have to experiment with.  

I think starting with the online generic Armour might be a good place to start, but keep in mind that there are other viable options.  

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NACi 2.4g, Zithi 250mg/MWF, minoi 200mg, Tinii 5day/1g/5 pulses, Valcyte
Iodoral 12.5mg, Supps, CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Sec Addisons

Reenie~ I totally understand that thyroid meds are not a "one-size fits all" considering where I have been through this journey as well re thyroid issues.

Some people "do" do better on synthetics, but not very many-- I've participated in discussions, and read of too many horror stories, undertreated patients, doc's and endo's not wanting to go beyond their comfort level or even the TSH testing. Many, many feeling terrible on synthroid and their doc's won't listen to  them.  You may be one of the fortunate ones who has an adequate endo.

Not to hijack this tread, but I am curious, though,... how high of a dose of Armour did your endo have you on because usually people with Hashi's who experience what you did are not on a high enough dose.... your body stops eating it up when it gets the dosage it needs. (And you probably weren't on Iodoral when you tried it then either, right?)  Most doc's don't like to go beyond 2 grains......just what I've learned from research and other's experiences, but again I could be totally wrong re your personal  circumstances. 

I respect your treatment choice...... but IMHOi, (especially with someone in Paula's situation) it would be better to try the natural stuff first, the synthetic T4 may be too hard for her to convert in the liver.

JeanneRoz

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JeanneRoz~CPNi diagnosed & started protocol 4/2007, also HHV6, EBVi. CFIDSi/FM diagnosed: 6/07; 100mg/doxyi/BID ~ 250 mg AZITH M/W/F ~1st Tinii pulse 4/17/08- 1 250 mg. tab for 2 days. Pulse 5: 9/28/08, 250 mg TINI BID, 3 days. Sup

Hi Mark,

I am doing battle with my thyroid yet again, so Paula, welcome to the club.  For a few years ago now I have been taking a compounded thyroid med for secondary hypothyroidism Levothyronin-T3 & Liothyronine - T4, ratio 1:4, between 2.5 & 3 grains.  Three grains is 37.5/150 mcg preparation here in Canada.

Prior to this when I was first diagnosed with 2ndary hypothyroid I did take a product called Armour.  We can't get it now apparently & that is why I was switched to a compound.  I was a little annoyed with the pharmacy who basically said that 95% of people just take the synthroid & that was why they wouldn't carry it anymore!~

Now I have switched to  3 30mg tabs of "thyroid" to see if this will make a difference. I also take 3 cytomel tabs a day.   Ihave been so cold, hands feet nose, waking in the night cold.  Even my feet are under a medium weight down comforter, with a duvet (that is 2 sheets) the bed linen sheet & a blanket stacked 3 high on my feet & a tackionic blanket on my body.

Of course, when the hypo thyroid isn't working, then weight gain occurs.  More pain exists when a person can't maintain a warmer body temperature.  My original doc who also has ME said that for every degree our temp runs below normal our body functions with about 25% less effeciency.  That makes sense to me.

welcome to the balancing act!  feels like a tight rope at times that is for sure.

Blessings for you both

peace

r

just fyi

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CFIDSi/ME 32 yrs, FMSi, IBSi, EBVi, CMV, Cpni, H1, chronic insomnia, Lymes, HME, Natural HRT peri-M, NAC 3 gm, Full CAP 6-2-08, all supplementsi +Sea Kelp, Chitosan Pulse 16 1-4-09 1gm Flagyli/day-3 days

Some years ago before I knew that I had MSi I had thought that I had a thyroid problem and had read enough to insist that my free T3/T4 was tested as well as the general TSH. I also asked my GP to give me a copy of the results ( I was beginning to think that she was a waste of space even then). It turns out that the general TSH came back as "euthyroid" which I believe is normal but the T3/T4 was in the low range.

When I asked what we could do about it she said, "We don't treat that." End of discussion. I don't think that the same standards of treatment apply in the UK as in the US concerning thyroid issues, so be prepared.

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Progressive MSi dx2006. LDNi & CAPi: Wheldon version. All supps. Doxyi 200mg. Zithi 250mg. Metroi 400mg.Pulses #17...I can because I think I can.

I take 4 tabs of Kelp daily & to be honest,I haven't noticed a change.  Except, my dry mouth is less than it used to be, which is a good thing!

later gator

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CFIDSi/ME 32 yrs, FMSi, IBSi, EBVi, CMV, Cpni, H1, chronic insomnia, Lymes, HME, Natural HRT peri-M, NAC 3 gm, Full CAP 6-2-08, all supplementsi +Sea Kelp, Chitosan Pulse 16 1-4-09 1gm Flagyli/day-3 days

Thanks Speedbird.  I accept that the NHS in this regard are as useful as a chocolate fireguard.

That is why I only plan to use them to train me how to inject B12 and do most tests in a private capacity.

Mark

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UK Carer of bedridden Severe CFS Feb06. Tick bites Summer04.  CPNi dx.Apr07. Borrelia dx Sept08. Samento 15 drps daily July07.  200mg Doxyi Jan08.  300mg Roxy Apr08 Stopped abxi Nov/Dec08. Building up on Supps again.