In constant pain

[whiteley]

Hypo for 7years back and forward to gp posted on hear several times trying to get yet another referral have an appointment with dr p in July .now had meds reduced last results tsh 0.32 17.84 ft4 all b12folate ferritin ok vit d at 24.5 now on meds for it high colesterol Now 100mg from 125mgtyhroxine feeling really unwell still now for 2years I'm in constant pain in lower back in my sides in my back near the hip area also both knees and hands and feet hurt all the time the pain makes me cry also the nausea is really bad night sweats horrendous I'm 53now. Any advice gp says com back in 3months x oh the meds are for vit d not colesterol

[mumanddaughter]

So sorry to hear that you are in so much pain ..if you haven't already ask your doctor to refer you to an endocrine specialist.

best wishes mumanddaughter .

[shaws Administrator]

I am sorry you have not improved much since you began levo. Your GP isn't doing you very much good and, unwittingly, appears to be damaging your health even more. They appear to know absolutely nothing about metabolism.Ask to be referred.

This is an extract re adjusting doses according to the TSH and cursor to the question to read the whole reply.

July 15, 2006

Question: My doctor uses my TSH and thyroid hormone levels to change my dose of thyroid hormone. He measures them every couple of months and has me increase or decrease my dose, depending on these little changes in the hormone levels. He calls it "fine tuning" my dosage. Personally I don’t see any change in how I feel even when he increases my dose a little. I just keep feeling tired, achy, and depressed. He seems convinced that by measuring my levels and making these little dosage changes that he’ll some day get rid of my symptoms. From reading your website, I don’t believe he’s on the right track. What do you think I should tell him to get him to use another approach?

Dr. Lowe: First I suggest that you ask your doctor to question the scientific basis of the endocrinologists’ notion of "fine tuning" by TSH and thyroid hormone levels. If he does, he’ll learn that the changes he sees in your TSH and thyroid hormone levels are probably nothing more than natural variations in the levels. He would probably see the same variations if he always kept your thyroid hormone dose the same. I’ll briefly review some of the evidence that your doctor should read.

web.archive.org/web/2010122...

[helbell in reply to shaws]

I've been thinking exactly this..or wondering. I mean, if our thyroid titrates up and down in synergy with the rest of our systems, how on earth can hormone replacement replicate the body's own tuning. I have come to the conclusion that sometimes we just have to find to the best spot we can; keep observing changes & riding the bad days taking extra care of ourselves, and rejoice in the good...as well as keep on trucking with testing, diet, lifestyle and research....and practice, practice, practice explaining how we feel in a composed and succinct way...(ahem). At my last endo visit, his assumption he had worked wonders for me only happened from my muted nodding because my brain fog was so bad I could barely connect with my mouth! I do realize endos are not all built the same. My small experience of GP service on this is woefully inadequate including not enough knowledge to connect an array of pain with thyroid hormone levels and absorption issues etc. And possibly a host of other things that are not quite right because along with artificial replacement we are managing autoimmunity..Gah! Maybe some just take the least line of resistance..or believe in the ignorance is bliss placebo effect...

Thanks for link :)x

[shaws Administrator in reply to helbell]

If the medical profession have 'fixed' views on how to treat us and our bloods are now 'in range' we are most probably thought of as 'troublesome' and 'smart alecs' if we question why we're not improving on levo. In fact I had far more unpleasant symptoms than before being diagnosed (and that took long enough and no doctor even took a blood test). If it hadn't been for a first aider's suggestion, where would I be now? I dread to think.

Instead of ensuring that the patient is improving/recovering or giving a trial of an addition/alternative thyroid hormone, thousands (may) remain very unwell and told "it's not connected to the thyroid gland as the TSH is in range' whilst getting prescriptions for the 'other' symptoms which might not be relieved if they are due to our slow metabolism.

I am forever thankful to the information on the internet.

[helbell in reply to shaws]

I was prescribed vestibular balance drugs, beta blockers, statins aspirin, and the common range of antidepressants for neuro pain ... diagnosed with multiple transient ischemic attacks, and the usual FMS and CFS (as well as considered a neurotic middle aged woman) ...We have been made more ill and fearful. Yes, all hail the Internet, and you fellow sufferers so active in helping others.

[shaws Administrator in reply to helbell]

This is from Dr Lowe (RIP). and this is an excerpt.

I am sorry you've had all of the above 'diagnosis' and treated thus. instead of looking at your thyroid hormones first and foremost and taking your symptoms into consideration and not as 'separate' conditions.:

The document this page introduces is a formal critique by Dr. John C. Lowe. In it, he presents documentary evidence for the ineffectiveness and harm of thyroid hormone replacement for many hypothyroid patients.

"The studies he critiques show that two studied types of replacement therapies were ineffective for many patients. Other studies, which Dr. Lowe cites, also show that patients using T4-replacement have an increased incidence of other diseases associated with hypothyroidism, and increased chronic use of drugs to control the symptoms of persisting hypothyroidism and those of other diseases."

I take this article to mean that the majority are being kept underdosed/undiagnosed according to the TSH only. If still complaining more/additional prescriptions are given. The new research says that T3/T4 should be given in a 1 to 3 combination. Drs don't usually give that combination.

Dr Skinner was also of the same opinon as were doctor trained during the 50's and before the blood tests were introduced.

[helbell in reply to shaws]

Yes, seems like many are under-dosed either because of slavish adherence to lab results and or the fear of heart complications. Everyone covering their butts.

I have Skinner and Lowe's book, and Broda Barnes and Lord knows a few more

[shaws Administrator in reply to helbell]

The most important thing the conventional endos/doctors seem to ignore is that thyroid hormones keep our heart in good condition but willy nilly adjust to try to keep the TSH within range when, in fact, it varies throughout the day. They also say osteoporosis when, again, thyroid hormones keep our bones strong.

jci.org/articles/view/65252

hormone.org/questions-and-a...

They spread scare stories about T3 but I don't think they know exactly what its function is. All I know is that the addition of some calmed my heart right down.

[Jackie]

Hi See an endo,as suggested, however, do your own research first. ie not the gP`s choice. Louise e mail for a small list is louise,[e-mail] If nothing suitable on that ,then reply to this" click on post "Reply to this" or I will not know, and i can explain how to choose an endo It is a mistake to not see a good one. Any good consultant treats on bloods together with symptoms, and common sense!You need other tests which the endo will do, ask for results and ranges,all vary.phone the sec when they have received them. The most important one is Free T3, you could well need T4 ( Levo) and T3 on a script. No way of knowing or safely to, you need that test first.

Best wishes,

Jackie

[whiteley in reply to Jackie]

My doctor refuses to send me to see another endo when I talk about the t4not working he doesn't understand about other drugs. Such as armour at the moment he won't give me a refusal letter and I cannot afford a lot of private treatment I am thinking of getting t3on line but worried about taking the drug without soupervistion

[Stourie in reply to whiteley]

T3 isn't a drug but a hormone that your body is missing. If you do buy on line there are plenty people to give you ideas on how to take it. When your thyroid is optimally treated your cholesterol should just lower itself. Mine came down from 14.85 to 4.6 in a few months of treatment.

Jo xx

[whiteley in reply to Stourie]

Thanxs for your advice are the companies ok to buy from on line and does it cost a lot do you know ?

[Stourie in reply to whiteley]

I haven't had to buy online as l get mine on the nhs. Sorry l can't help you there.

Jo xx

[Jackie in reply to whiteley]

Hi At this stage ask for a copy of the Endo`s letter to the gP and a copy of all blood tests he has done. with the important ranges. Ask his NHS secretary.If not completely useless he would have tested tSH, T4 and Free T3, to show that you need Levo and T3 on a script, this is not Armour or any NDT, but 2 separate drugs often used together. He should have also tested vit D, hormonal and vital and iron/Feritin. If D low the GP should certainly do a calcium test as basic safety, then the only option you may have is to treat your self with D. It will unfortunately cost you but can make a huge difference to the thyroid Iron/Ferritin make a huge difference to how you feel. That also is always tested first visit.If low, a huge range, you could take Spatone, liquid sachets, the one most endo`s prefer ( less side effects). That is cheapest on Amazon. What tests has your GP done, ask receptionist for a list with ranges ( all vary).T3 on line, I would not do it although had thyroid disease many, many years and am totally informed. It is a very powerful drug and brilliant but can also be very dangerous.. At the very least you would need to have frequent bloods done, TSH, T4 and Free T3, On line, i use Blue Horizon but even if you quote TUK 10 for a discount, you are talking £61, that is the only safe way of taking T3 either on your own or under a doc.Armour has T4 and Free T3 in it, may well help you, but without a script on line it has some dubious sauces ,although some made by Forrest, the sole manufacturers then the product safe, but you would still need some blood tests., for safety.I was overdosed by a private doctor and it has given me some permanent major illness, although years ago when it happened. This was without enough tests, very few in fact.I reread your first post, see that you are on D, also looks like you are on iron/Feritin???

Best wishes,

Jackie