I cannot understand the Fibromyalgia attitude from those who're members of that forum.
I thought a comment (my very first on that forum) might be helpful but was shot down in flames. I thought it could help many (according to Dr John Lowe), Well! the response wasn't what I expected and would never put anything on it again..
I understand what you are saying but the issue is complicated. Many with fibro (like many other conditions) have had their ill health dismissed for many years and will have been tested for thyroid disorders, possibly often, and sent away as normal, even considered hypochondriac. We know how hard it is to get a clear hypothyroid or autoimmune thyroid treated, never mind a subclinical that might be causing symptoms of fibro, or some of those symptoms, in some people. So they are likely to get quite upset, reasonably, when told that all of their problems are down to the thyroid. There are numerous theories about what causes fibro including COMT/methylation, cytokines and I have now been told that I have Small Fibre Neuropathy - which is behind 50 % of fibro, according to some doctors, but that still leaves the other 50%. And then there is Sjogren's of course, sjogrensadvocate.com/post/s...? I don't think fibro only has one cause throughout all sufferers, much like restless legs doesn't. If only it were so straightforward. So yes, we need to work on getting our thyroids functioning as well as possible, including blood sugar, oestrogen, vitamin and mineral co-factors, diet, gut and liver health etc etc, so that our brain is giving and getting the right signals, then add hormones if still needed, but just taking hormones alone often doesn't resolve the symptoms of fibro. Because many of us don't get a diagnosis and certainly don't get any information about how to calm down any autoimmunity, we end up getting a second and a third and on. So symptom overlap and layers of additional new symptoms make the whole extremely confusing for many people and both distressing and stressful. Most people with fibro know of the link and will seek information if and when they are ready to peel back another layer of the onion and this forum offers great advice and support when called upon. Best wishes
Yes, indeed. It all becomes very complicated. I even think that my trouble all started with that tick bite I never discovered: Lyme disease, which lead to fibro-type symptoms, which travelled throughout my body to a different location every 3-4 days, and making it difficult to explain to a doctor in the 1970-80ies when there was not even a proper test for lyme disease. Over time it all faded and changed and but added to the hormonal troubles that came after the (unnecessary)removal of my ovaries in the 1990ies. After that followed "dead" feet, which probably is the small fibre neuropathy you are referring to, which was followed by discovery of hot nodules on my thyroid, (got the nuclear pill) which was followed by troubles with walking (like a 90 yr old I was only able to shuffle, which was helped by taking estrogen (again), after I was refused it because of possible breast cancer sacre. The estrogen helped me back to moving my legs and walking much better, but the damage done over the years, to my feet with the neuropathy, my knees by walking weird for some years, and my knees showing arthritis and the added on weight issues by not moving enough, still keep me still in a position that I need a cart throughout the store, and a walker for longer distances. I am of course also sitting too much. Like you said, it is a multi- layered problem, like an onion.
Well, Dr John Lowe, a scientist, researcher and knowledgeable about how to relieve symptoms of fibromyalgia as well as other conditions was awarded often for his scientific /research knowledge.
He actually began searching about 'hormones' when a teenager and that was due to him trying to solve the reason why his father and his father's brothers committed suicide. He did find out.
This enabled him to find out why T3 was a very important hormone altogether and I assume maybe better than anti-d's.
I am aware of Dr Lowe's work and also was lucky enough to see Dr Peatfield, but thank you for your reply. I am sorry that you also have multiple autoimmunity. Best wishes
I left the forum because of this attitude. I was almost hounded out but left before I could be. The comparison with this forum is like chalk and cheese.
I would think that everyone who's on this forum would be delighted if someone posted that there was a way to assist relief of hypothyroidism.
We'd be willing to try whatever was suggested.
What I posted on the Fibro was by a scientist/researcher/doctor and also an expert on all of these conditions. Dr Lowe became a scientist/researcher and especially about thyroid hormones due to the fact that his father and his father's brothers committed suicide and that began Dr Lowe's studies (I believe as a teenager) to the possible reason and came to a decision.
We read on this forum about doctors prescribing anti-depressants but have they checked Free T4 and Free T3? I doubt they do so.
GPs are not allowed to test Free T4 or T3. Told from two doctors recently, if you claim hypothyroidism. Your average GP knows nothing your NHS Endocrinologist knows not much more. If you go to GP unable to sleep eat all the time and still lose weight they might test you as hyperthyroid by a Free T3 test. But said patient say's I don't want treatment and become hypothyroid and be doomed. Ok off you go come back if you have anything else. No mention of brittle bones. Enter long standing hypothyroidism within range results. No dear, it's what you are doing to yourself eating too much, overthinking, something else wrong with you. So why am I fat when I have no appetite. Well dear it's all your head! We can't treat you or increase your meds as on normal range in case of brittle bones. It's all nonsense.😐😐☹️☹️🙄🙏🙏
They fail to understand that because our metabolism is lowered that unexplained weight gain is one of the clinical symptoms but we, the patient are thought to be over-eating. No sympathetic doctor who assists the patient who is symptomatic.
Very interesting article. The fact that different antibodies seem associated with different symptoms makes me wonder why the antibodies are rarely tested for or taken seriously.
Most medics don't think the type or number of thyroid antibodies matter because the treatment is the same regardless. Prescribe levo. Job done. If patient says job not done, prescribe antidepressants.
You nailed it there. Let’s hope over time their significance might become of greater relevance to the medical profession and trickle down to better understanding and treatment protocol…. but so far so bad, I’d say.
You may be fortunate to be diagnosed and given some type of medication.
Others, remain undiagnosed but unwell. No investigations as the assumption is the patient is a hypochondriac. (my personal experience).
It's thanks to finding Thyroiduk before this forum that helped me immensley. It comes as a relief when you find someone/or a forum where questions are very similar to what our own questions would be.
I have fibro, cfs m.e. I first got diagnosed in 1999. I lost everything and everyone to this disease that Drs say doesn’t exist. I now have autoimmune thyroid disease and on levo . I’m still struggling with my thyroid and getting no help from Drs.
A lot of us have been to hell and back, our symptoms dismissed or looked at in complete isolation, family histories ignored, offered antidepressants which were completely inappropriate. I was convinced I was a hypochondriac and let myself become so ill I nearly died. You couldn’t think it was happening in this day and age, but it is far too common. This site and the people on it helped me get my life back and start to better understand my condition and take control of my health. I used to feel so helpless and utterly alone struggling to get from day to day, it’s was awful. I feel so much better now, my life is worth living again.
No one was actually directly unpleasant to me. I think they were plain ignorant about thyroid disease and it was easier to blame symptoms on something they had a little more knowledge of but a little bit of knowledge is a very dangerous thing I was to discover to my great detriment. Incorrect diagnosis did the NHS and me no favours at all.
I was diagnosed with all those too years ago and it took a visit to the dear and much-lamented Dr Skinner to get a under-active thyroid diagnosis which has never been accepted by any GP since. I am now a full-time carer to my OH who has Parkinson’s and am really struggling with symptoms (on Erfa which I think may be part of the problem).
Sounds like you’ve really been through it to get tested and Finally diagnosed, But I am so sorry to hear your suffering So bad it must be hard for you, I changed to mercury pharma Levo and saw a bit of improvement myself because I’m able to tolerate them better but I still don’t feel well. It’s so hard isn’t it, I hope you get back on the road to recovery soon and wish you and your OH well x
Dr Skinner and Dr Peatfield, who I was also privileged to consult with and both were of the 'old school', i.e. knew clinical symptoms before blood tests were introduced (how much does it cost the NHS to pay for blood tests at present) and they saved many lives.
Many doctors like the two above were then pursued (as those two were also) for doing as they were taught as students, i.e. symptoms, symptoms and symptoms and patients were given a trial of NDTs (now withdrawn and was the only one available since 1892). NDTs means 'natural dessicated thyroid hormones' made from animals' thyroid glands and saved lives from then on but now withdrawn again through lies.
I hope your doctor will prescribe another or would your pharmacist source another NDT?
I was luckily accepted as a patient by Dr Myhill after Dr Skinner died, but, of course, she can no longer prescribe. I have since had one telephone appointment with Dr Boardman & she did say that I could try Armour if Erfa did not work (I was on Nature Throid before, but it has been withdrawn). However, I am worried about the cost of Armour. One door opens and another seems to close….
You nearly died.. that’s a terrible thing to hear, I’m so sorry you suffered like that but I’m happy to hear you made it And didn’t die diogenes . I wish you well and A big thank you for your encouraging reply x
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