My wife is a long term Hashimoto's sufferer and has been on T4 only for 46 years and more. Accompanying this has been fibromyalgia almost from the outset which comes and goes at intervals. Recently she developed shingles, which was not only painful in itself, but gingered up her fibromyalgia very badly (but only on the muscles where the shingles blisters were, on the right side of waist and thigh). Has anyone on this forum had this combination and how did they treat it. NSAIDS and paracetamol are useless, but tramadol seems to work at the expense of knocking her out. Something just as effective but not putting to sleep would be appreciated.
Shingles, fibromyalgia and Hashimoto's - Thyroid UK
When I was in the US they prescribed Gabapentin, don't know if its worth looking into that? Sorry she's so unwell, shingles are vile, do hope she soon recovers.
Thank you for the advice which she'll take to our (sensible) GP. My wife and I have been fit until about 5 years ago when we did our last 10+ miles hike in the Lakes. Then first I ruptured my Achilles tendon, had a heart attack and then my wife's stamina started going downhill. Age I suppose (we total 159 years between us). Vitamin D she takes at 1000 units/day and levels are OK. One bit of advice for active T4 or combined takers. You are like a car filled up on fuel to start, but eventually the fuel runs out and the collapse is sudden and total. We found out about pacing ourselves very early on so as to complete a hike before crisis came on.. Lack of thyroid means continual observation and learning what you can and can no longer do.
I can SO relate to the car analogy.I use car battery analogy.Feel fine(on T3) for 2 or 3 days then its like my battery goes flat overnight & it takes at least 3 days & huge amounts of resting to slowly trickle charge my battery back up.
Its the same if I catch a bug,whereas my husband(also 65)can re charge at normal speed after exertion or illness.
Pacing myself is the name of the game now,as you say.Just wish it didn't take so long or require so much doing nothing to re-charge.
I was also prescribed Armour in the US for my chronic fatigue, which made me really well for 3 years, but was withdrawn in the UK as my results didn't warrant it (despite being same as those that had doctor reaching for his prescription pad in US - he believed all the symptoms), so I am fully aware of the terribly debilitating effects of hypothyroidism, now untreated.
The Vit D levels in the US are higher, I believe, you might want to look into that, they are more advanced in their research over there (and another thing is that the older we are, the more we need as we synthesise it less effectively). Also, Vit C alongside is very important, especially for immunity - the good doc who prescribed my Armour (an ENT consultant) was also an immunologist and prescribed supplements alongside - he advised 3-5000mg/day, which I've stuck to. You pee out the excess. Zinc another essential.
Good luck to you both, you deserve to catch a break after all the terrible health hurdles you've faced.
i have Hashimotos - diagnosed in 2005. In 2000 I was diagnosed with Fibromyalgia by a Rheumatologist privately in the UK - a downgrade from PMR - Polymyalgic Rheumatica - diagnosed by the GP.
Once on T4 in 2005 - then T4/T3 - then T3 only I regained my health. Isn't Shingles the Chicken Pox virus rearing its ugly head ?
How are her levels of VitD ? Maybe there is some immune stuff going on and could it be the thyroid anti-bodies are on the rampage.
As you can tell I am not a scientist - just a fellow sufferer
Happy to help though
Diogenes, I've had this combination on and off for over 40 years. I'm sorry to say I've found no answers. I know if I get a bit low then the shingles raises its ugly head but the comfort I can give you is that each appearance is less painful and less debilitating. Only last week I had a small outbreak of the blisters on my right arm, why? Well I had dared to push myself by trying to do some very very light exercise. I also know that citrus fruits seem to exacerbate things. I know that might sound strange to some people but over the years I've tested it out and for me that is a fact.
Medication wise I'm near next to useless to advise as nothing has really helped. I'm on t3 only due to anaphylactic reaction to thyroxine. Oh, b12 injection for PA too.
Please give her my best wishes and maybe the comfort of knowing that she's not alone in whatever I term 'MY BUG' is. It's now 'OUR BUG'
Wish I could help more, sorry for the grammar but I've a foggy brain today.
I think they must be related, I know hashimotos can leave you open to infection. I had opthalmic shingles last year and was ill with what eventually was diagnosed with fibromyalgia, and hashimotos. You have one issue it just leaves you open to others. I was given an eye gel for the shingles which I used for ten days. Sorry, can't remember the name of it. I went to local A+E eye hospital for this. It worked and I don't remember any side effects. Maybe go to your local A+E? :-).
Diogenes, as far as I know Fibro and CFS were named about ten years after levo plus blood tests were introduced. Dr Skinner also mentioned that he was asked to see patients who had been diagnosed with CFS/Fibro and he said their symptoms were of hypo and he began trial of NDT. I'm sorry your wife is in pain and recovers soon.
Shaws I was diagnosed with M.E. years before my Hashimoto's. Later on a similar illness to M.E. - fibromyalgia - seemed to appear then PVFS/CFS. I think I have them in the correct order? Please feel free to correct me.
Yes, my t3 treatment has helped but not to the degree I had hoped. My thoughts are that many of us are medical mysteries but I hope that research will eventually be able to help us all.
You do a brilliant job on this forum I for one will always be grateful. 'M'
I'm sorry you still aren't completely better. The following is the first time I've read these comments from people who read and were helped by Dr L. I copied and pasted as I haven't seen this book on Amazon for a long time and it might disappear altogether:-
Top Customer Reviews
5.0 out of 5 starsa much cheaper, possibly better, option is available
By D&D TOP 50 REVIEWER on 18 Jun. 2014
A superb book, essentially explaining how fibromyalgia is successfully treated with thyroid supplements.
I look at specific chapters from time to time but, for usable practical information, you need "Stop the Thyroid Madness" (STTM) a wonderful how-to manual, a book I consult at least monthly. There is a website of the same name with masses of information, although not as complete as the book.
The author of STTM reports that doctors are, at last, beginning to contact her about the amazingly detailed information in her book.
Comment 3 of 3 people found this helpful. Was this review helpful to you?
By cbeatty on 13 Nov. 2012
Format: Hardcover Verified Purchase
If you have thyroid problems this is the book that will give you all the information you should ever need. Absolutely brilliant.
See both customer reviews (newest first)
Write a customer review
Most Helpful Customer Reviews on Amazon.com (beta)
Amazon.com: HASH(0xa18d9210) out of 5 stars 7 reviews
75 of 76 people found the following review helpful
HASH(0xa1988a80) out of 5 stars "Must have" book for Fibro docs 2 Jun. 2001
By Devin J. Starlanyl - Published on Amazon.com
John Lowe explains the rational for metabolic treatment of fibromyalgia with specific thyroid supplementation. He has found that patients who test low on standard thyroid testing respond well to a combination of T3 and T4. This is backed by his own well-done studies, as well as research done by J.B. Eisinger MD, leading FMS metabiolic researcher in France. In addition, and this an important finding, FMS patients who test normal on the typical thyroid panel respond well to T3 therapy. Dr. Lowe makes a good case for FMS patients not being able to metabolize standard T4 forms of therapy. His protocol includes sound dietary practice with avoidance of excess carbohydrates, appropriate exercise to tolerance and appropriate bodywork. This book is a "must have" for anyone with a practice that includes fibromyalgia patients.
66 of 68 people found the following review helpful
HASH(0xa198848c) out of 5 stars This Book Saved My Life - Really! 16 July 2004
By Goobygirl6 - Published on Amazon.com
My fiance' bought this book a year ago while I was severely suffering from fibromyalgia. I was no longer working as an attorney, could not even read a magazine article for lack of concentration, I had extreme pain and fatigue, couldn't drive, couldn't care for myself to the point I was on disability. I was hesitant about buying such an expensive book (more expensive than any law school book I bought) but understood why it was expensive - it is packed with medical information. This book is one you should buy and take to your doctor if you want to get well. This is exactly what I did. My doctor then began treating fibromyalgia patients exclusively because of this book!
I am not completely healed yet, as I have been adding doses of T3 slowly. I have gone from 5mcg to now 110mcg and am getting energy back and finding my pain reduced. My type of hypothyroidism is euthyroidism, which means I am thyroid resistant. All my blood tests were low normal before I started this protocol. Blood tests alone CANNOT detect hypothryoidism.
If you are interested in just getting the basics of the protocol, the $30 guide is a better choice. I have both books.
It doesn't take a long time to get better on this protocol as long as you do all of Dr. Lowe's suggestions (get off sleep meds, anti-depressants, etc) and add thryoid on a regular basis. Now that I am upping my doses, I am feeling better and getting better.
30 of 31 people found the following review helpful
HASH(0xa18c4f90) out of 5 stars Living proof that Dr. Lowe's research is significant and valid 16 Aug. 2007
By . - Published on Amazon.com
I heard about Dr. Lowe at a local Fibromyalgia organization meeting in 1996 when a woman stood up and shared that she had been 'cured' of Fibromyalgia by him. At this time Dr. Lowe was still in Houston and doing research out of his home. I found him and he began to treat me. I was so tired I could hardly stay awake. Several days a month, I was so sick, I couldn't work (or even get out of bed). I took handfuls of vitamins, and tried to exercise, but I couldn't focus, and my whole life was falling away. I am an MBA/CPA and was in jeopardy of losing the life I knew, and having to file for disability.
I made an appointment with Dr. Lowe and after ordering many tests and reviewing their results, Dr. Lowe determined that even though my thyroid tests were all 'in range', my symptoms showed that I was Euythroid. As part of his research project I got up to 300 mcgs of Cytomel daily, before I had a single reaction to the Cytomel. Today, 11 years later, I am still taking 100 mcgs of Cytomel daily with no negative responses or bone thinning... and I have a very good quality of life - thanks to Dr. Lowe.
If your Doctor squirms at the thought of so much 'unstable' T3, then you know he's been educated to diagnose thyroidism by a blood test, and not the symptoms.
God bless Dr. Lowe for his unwavering dedication and passion to research and not taking the 'norm' as fact.
15 of 15 people found the following review helpful
HASH(0xa18c4c60) out of 5 stars The truth about fibromyalgia....and finally the cure!!!! 5 Jun. 2007
By I. Isela - Published on Amazon.com
I have been following Dr. Lowe's treatment for 6 weeks and finally have dramatic relief from the debilitating symptoms that I have had for over 20 years. I highly recommend this book for anyone suffering from pain and fatigue or fibromyalgia. This book can be a bit technical for someone who doesn't have a medical background, but explains the reasons for "fibromyalgia" symptoms and contains detailed information for treating thyroid resistance safely.
Aww, thank you Shaws for that. ⭐️⭐️⭐️⭐️⭐️ Let's just say I learnt more from this forum in a few months than I have in all the years I've had this illness! X 'M'
I have done the rounds myself. I think most of us do. I was really surprised that I was worse after levo than before I began it (TSH was 100). Your are right about the 'diagnosis when TSH doesn't fit the bill'. The 'new' names came about ten/15 years after the TSH was introduced as 'the new and perfect test'. So those whose TSH didn't fit the criteria they had to make new names for the 'symptoms' 'conditions' and prescribe other than thyroid hormones.
The problem is that fibromyalgia can be hereditary without other problems. My daughter already has it, but no thyroid problems so I believe it to be yet another autoimmune syndrome that can happen by itself regardless of anything else.
Diogenes, Dr Lowe wrote a huge book about the 'Metabolic Treatment of Fibromyalgia' - I last saw one on Amazon at around £900 but I've just looked again:-
This is a link and you will see that he has made a connection with fibro. He was also the Director of Fibromyalgia Research Foundation. As far as I read it isn't hypo but a Resistance to thyroid hormones.
In autoimmune disease there are multiple causes of development. As a fable, a hen may lay an egg but isn't forced to do so. And the egg may hatch but isn't forced to do so. So though fibromyalgia and thyroid disease are linked, it doesn't mean that you can't get fibromyalgia without thyroid problems. Thyroid disease can cause fibromyalgia but that is only one of many triggers. The problem with autoimmune disorders is that one can predispose to another e.g. Sjogrens syndrome, lupus, diabetes, and many others.
Not necessarily - I developed fibro after an unexplained or treated infection early in college. Started having thyroid problems after the birth of my first son. They are not the same medical condition.
Suddenly a change of surgery made all the difference to me. Prior to that I'd get a diagnosis and then another dr would deny it and so it went on. Even now, having moved area, The controversy continues and I have doubts I will ever get a true diagnosis . I'm sorry to say that there are many people in the same boat. To my mind no two people are the same and react differently to medication. We all need to be treated as individuals! Is that too simplified? Sorry, I'm rambling now. Thanks again. 'M'😉
I myself am a Hashimotos sufferer, along with fibromyalgia and have also suffered shingles, which I've had a couple of times. My Dr prescribed me Amitriptyline, which is a nerve blocker and helps you sleep, along with other strong pain killers. I use naproxen for my fibromyalgia too. I wish you wife a speedy recovery, from a horrid painful condition. Is she under much stress? I feel it's stress which brings shingles on for me.
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