Been back to see endo today,has told me not putting me back on t3, has left me on 50mcg of thyroxine, has discharged me and said my symptoms are not to do with thyroid as my Tsh, t3 and T4 are all now in range since taking me off t3
Feeling desperate: Been back to see endo today... - Thyroid UK
Feeling desperate
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tactano50
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Please ignore such nonsense, tactano. It's rare to find a doctor even an Endo who seems to understand this condition. If you are not on the correct dose in time all those "normal" numbers are going to drop. Regrettably, many of us have to find other means after reasoning, cajoling, and sometimes begging proves unsuccessful. I'm not in the UK but there are many here who can help in that respect. It usually is not as difficult as you may think. Easing your dose upward slowly will usually get you to a real normal level.
Don't allow these pseudo practitioners ruin your health.
Heloise, just have to applaud you, "Don't allow these pseudo practitioners...".
Thanks, Linda, it's my new mission. People just have to take responsibility for some of our health issues. We are being spoon fed disaster. Between the Codex to disallow supplements and genetically modified foods with who-knows-what they are packaging these days and cancer rates rising. ..... I don't know if you have heard of John Grishom's new book, Tumor. Even a famous author is already getting flack for trying to cure brain tumors. No, the medical profession is no longer to be trusted.
Absolutely Heloise - been mine for a while too - plus challenging them... time to give that up and just focus on what works best?
No I haven't heard of Grishom's new book, thank you! Given the appallingly shoddy treatment that I read about on here and that of pretty much the whole of my family, going back generations, I am still stunned at how dreadful doctors can be. I appreciate that medicine is without doubt an inexact science but the sneering arrogance that many of us are faced with is a huge issue. Patient blaming is grotesque... agreed, no longer to be trusted.
I have looked back through earlier posts of yours and cannot see any results. Difficult for anyone to comment helpfully without them. Please post your latest results with ranges and people will be able to advise.
Have you had the basics tested - Ferritin - Folate - B12 - VitD ?? They are very important for your well being and for the thyroid hormones to work.
50mcg is a very small dose and may not be helping you adequately - the results will show more.
Thankyou yes my vit d and calcium were found to b low 2 years ago I now take 3 tablets daily for this my iron and ferritin are again within range. My latest results are tsh 3.12 re f0.4.4.5 freet3 4.6 ref 2.5-6.5 free t4 14.6 ref 8-21.
What level is your VitD and B12 ? Sometimes it is not being in range that is OK - but WHERE you are in the range....
Your TSH is too high and would be better around 1 or under - FT4 also too low in the range - T3 not too bad !
Videos are not working today I guess but this article may explain a few things about T4 and the website has lots of good answers about thyroid support. stopthethyroidmadness.com/t...
Not sure of vit d as don't have range but I am taking 3 tablets daily for this my b12 352ngl ref 211-911 and ferritin 103 ug/l ref 19-330 ug/l
Sorry - it is confusing as you post without punctuation. I thought you were taking 3 iron tablets !! Your B12 is on the floor and needs to be around 1000. Also take a GOOD B complex as B12 works in the body with Folate. You also need to keep all the B's in balance.
How are you treating the Low B12 ?
Sorry for my bad punctuation. Yes I take 3 tablets daily for vitd. I don't take anything for b12 my results were 352 and the ref range is 211-911 was told as in range all ok.
b12deficiency.info/signs-an...
As my previous post stated - where you are in range is important. For B12 it needs to be around 1000 - anything under 500 can be the cause of neurological symptoms. Please study the above link I have posted to learn about how important B12 is. Click onto Films and watch the videos - especially the 3rd one down to see just how serious B12 deficiency is. Sadly Docs are NOT trained in vitamins so we have to learn for ourselves.
I would treat your deficiency asap.
Will do thank you. can you recommend where from?
Jarrow methylcobalamin 5000 mcg from Amazon is very popular on the forum. Keep the lozenge under the tongue until dissolved - do not chew. It is absorbed by the micro-circulation under the tongue and avoids any gut issues causing absorption problems. Don't forget a good B complex with Folate or Methyfolate rather than Folic Acid.
You cannot overdose B12 - any excess not used by the body will be excreted. Did you look at the website I posted ? Please give yourself time to have a good read. You can click onto my name to read my edited Profile - then you will understand how I have had to learn to help myself to wellness. We have to do it for ourselves I'm afraid - which means lots of reading and learning.
Can you clarify? He did try you on some t3 and has now taken you off? How did you feel on t3? What were your bloods then and now, get a copy from your surgery and post them.
Hi yes my gp referred me due to excessive sweating of which I have suffered for years but was getting me down also breathlessness and fatigue.I was diagnosed about 10 years ago although had suffered for years before diagnoses until about 2 years ago was on 100mcg levothroxine,then 2 years ago had a lot of health issues was sent to endo, who said my calcium and vitamin D were low and that he would try me on t3 I was given 20 mcg of loithyronine 3 months later was told still a bit low so to add 25mcg of thyroxine, but was still suffering with headaches and fatigue at times, just tried to get on with it.endo did some tests in Nov tsh was 2 ref 0.4_4.5 free t 3 was 6.6 ref 2.5-6.5 freet4 ref 9.1 also did cortisol level 9am was 169 ref range 220-750 was then given a short synacthen test 9am cortisol was 420 after injection 30 mins later rose to 720. He sent a letter to take me off t3 as t3 was out of range. Had more tests after only being on 25 mcg since Dec tsh was 4.32 ref 0.4-4.5 freet3 6.2 ref 2.5-6.5 freet4 13.1 ref 8-21had more tests last week before seeing endo and having my thyroxine increased in Feb to 50mcg tsh now3.12 ref 0.4.4.5 free t3 4.6 ref2.5-6.5 freet4 14.6 ref 8-21 was told everything all in range symptoms nothing to do with thyroid mentioned Dr Tofts recommends tsh of 1 or less said that's not true muststay on 50 mcg of thyroxine and will discharge me.
shawsAdministrator
First thing to do is get a print-out of your results with the ranges and post on a new question for comments.
I was reading and this phrase seems to explain your treatment by the Endo which is apparently quite common. You have to decide whether you are going to get better which might now mean you have to source some thyroid hormones on your own. It may not be ideal but it may mean the difference between continued ill-health or good health. Extract:-
"I want to state emphatically that the woman should not settle merely for having thyroid function tests and antibody levels checked. If her doctor doesn't also know how to perform a clinical evaluation—assessment of her history, symptoms, and physical exam findings—the doctor should refer the woman to another doctor who does know how.
Usually, an endocrinologist is the wrong choice. In general, these specialists have virtually no training in or knowledge of clinical medicine or experience in doing clinical evaluations. The best choice is an alternative doctor knowledgeable about hypothyroidism and experienced in treating patients with products that contain both T4 and T3 as part of a holistic metabolic regimen. If the woman does consult an endocrinologist, she should make sure the specialist isn’t a dogmatic advocate of T4-replacement therapy; instead, she should see to it that the endocrinologist is enlightened enough to treat hypothyroid patients as alternative thyroid doctors do.
and
This makes sense, of course, only if she isn’t troubled with symptoms of hypothyroidism. If she does have symptoms, it’s usually best that she begins thyroid hormone therapy. If she does, she should choose a thyroid hormone product that's likely to be effective. That means it should be a product that contains both T4 and T3. Using a preparation that contains only T4 is likely to leave her suffering from hypothyroid symptoms. And chances are, a doctor will diagnose her continuing symptoms as fibromyalgia, chronic fatigue syndrome, or some other so-called "new disease." Based on the diagnoses, the doctor will prescribe a variety of drugs to try to control her symptoms—symptoms he fails to recognize as those of hypothyroidism."
My GP also recently informed me that I can't get T3 on NHS anymore. So I bought it online, it wasn't expensive. Most important to me now is that I don't have to stop with T3 because it makes me feel much better.
Witchymp• in reply to
That has recently happened with me too. I was gutted but thanks to people here I also bought some online. After taking it for 8 years I couldn't face the prospect of going back to life as it was before I started taking it. Good luck.
Why do endos not know the symptoms of hypothyroidism? This exact thing happened to me also. I was told low temperatures, exhaustion, dry skin, aching joints and muscles was not my thyroid. After a few weeks I received a letter from him saying my antibodies were in the 600's, my B12 and Folate had plummeted in 15 months. He said no doubt I had hypothyroidism, but I never saw him again. It seems that so many of us have had this "treatment" After going through this 3 years ago, I've been self medicating ever since.
Demand your lab test sheet(s). Can't give you advice without some numbers; "normal" is meaningless. To an "endo", a number anywhere in the lab range is "normal", and that is a joke.
Still reeling from the fact that he has stopped T3 because it is slightly over! What's wrong with cutting down slightly as well. You have improved on it so I imagine your body needed it! just a slight dose tweak needed!
Or did you take your T3 before the test?
Hi tactano 50 , the exact same thing happened to me word for word !!! So only thing left after 19 years of struggling was to self medicate . My choice was thyrogold and I can honestly say this is the best I have felt since having hashimotos this forum and all the fellow sufferes have been a great help in deciding what to do .
HI thank you where do you get thyrogold from and how much Is it? I am not well at moment with viral chest infection feeling pretty rotten and I'm worried over my very low mood since stopping the t3 just feel overwhelmed with it all and numb.it does help that everyone on here understands.your made to feel like a hypochondriac by the endo and gp. I've just lost my fight right now, but like many on here. I will get up and fight again and prob go the self medicating root. The mad thing I could go tomorrow and get antidepressants at the drop of a hat. Thanks you again.
Hi tactano i send to US for thyrogold , just type in thyrogold or how do I buy thyrogold , all the info comes up . Dr John Lowe researched for years cfs/ fibro/ hypo and eventually produced his own NDT sadly he has passed on but his wife has kept up the production . The capsules come in two strengths I just buy the 90 of 150 mg s , I take one a day I and I have no foggy brain no lack of concentration, no pins and needles ,numbness headaches pain in joints and muscles , carpel tunnel , inner tremors, palpitations , pounding heart, sore throat jaw pain and I have no chronic fatigue just the usual tiredness and I had all these symptoms for years !!! I had very little help over the 19 years of becoming ill as you say I have been told time and again 'it's all in your head there's nothing wrong , you're imagining it your just depressed and urged to take antidepressants which I have not accepted . Because all my thyroid blood tests always came back normal thyroid disease was dismissed and I was "diagnosed " with CFS/ fibro which I never accepted . Managed to get thyroxine years on and I became 50/60% better so just lived with remaining symptoms . Eventually I talked a doctor into letting me have a thyroid ultrasound results were, gland shriveled and inflamed , diagnosis hashimotos !! After a lot of hassle the endo agreed to a trial of T3 +T4 10 mg s of course this had no effect at all so instead of upping the dose he point blank said we don't prescribe T3 I asked could I try NDT ( armour) that was a definite NO . This is when I really upset him , I was so annoyed with his arrogant behavior , I asked him"are you a proper thyroid doctor or do you mostly do diabetes " ' I don't do diabetes at all ' he said !! I know what helps one patient doesn't another we are all different but if you did well on T3 I don't see why thyrogold won't help it has all the hormones T4T3T2T1 I would certainly recommend giving it a trial . Jay
Thanks can I ask how much it is and do you have problems with customs?
I canister of 90 capsules 150 mg s costs £ 24 I have no problem with customs , order it on line and it comes with the post man 3/4 days later . I know we have free prescriptions here but not much good when doctors won't prescribe the hormone we need to make us well . One 150 mg s capsule a day works for me this is after taking it since April last year , I feel so well . Reading other people's testimonials many need higher dose . It also comes in 300 mg s obviously costs more . The advice is to start on one 150 mg s a day . Hope this helps
Yet again, people facing this absolutely disgusting conduct from whatever they're calling themselves: (my father used to say, "Quacks who had just scraped through" 
never having been diagnosed with this, yet running right through his mother's side of the family and all the way down to us. He died of Motor Neurone Disease aged 54 y/o, potentially due to polypharmacy, since they treated him for asthma never knowing what it was, leading to one drug after another to counter ever growing side effects of steroids then warfarin etc, etc, how much further down in the mitochondria do you need to go than MND!).
Stopping NHS T3 - which I am told is one of or the very weakest - is likely due to cost yet the NHS permits itself to be royally ripped off in any event with so many products.
Treatment for many of us with this HORMONAL condition barely exists; since Type 2 diabetes can also be pretty much self treated [with appropriate diet etc]... hopefully numbers of endocrinologists will also over time be 'cut'... for the good they seem to do, let's say by 75% Perhaps stress of no work will affect cortisol and adrenals, do in their hormone levels, only to be faced with people just like themselves Sorry, I never, ever wish anything on anyone... for endos I will make that exception. Feel it!
Very best to you Tactano50, chin up and I hope you 'get your fight back' soon (know exactly what you mean) - you've got some great people to turn to on here, which is just as well for all of us. Take care and be well xox
Thank you so much it means a lot. I Have just looked up the Endo I saw on Monday, he is a diabetes specialist and runs a weight loss clinic. Says it all.
this is an excerpt there is probably a good deal of people diagnosed with thyroid problems that have this mitochondrial dysfunction
Since mitochondrial energy production accounts for the vast majority of total energy production, mitochondrial function is a necessary and essential aspect of the regulation of basal metabolic rate. In other words, either decreased thyroid hormone or mitochondrial dysfunction can lower basal metabolic rate and induce the symptoms of hypothyroidism (cold hands and feet, sensitivity to cold weather, psychological depression, cognitive difficulties, dry skin, scaly scalp, brittle hair, menstrual problems, constipation, diminished stomach HCl production, etc.). Non-thyroid-related mitochondrial insufficiency could easily account for the high incidence of hypothyroid symptoms in individuals with otherwise-normal thyroid hormone levels. Perhaps a significant amount of subclinical hypothyroidism is really mitochondrial insufficiency
Thank you for the link machineman, I will read it with much interest. Indeed there is a current renowned doctor in UK who talks about it being 'mitochondria' (as opposed to 'their' take as 'hypochondria').
Given my family history, I stay away from docs 'cocktails' because I don't believe adding tons of pharma rubbish to some of the hypothyroid symptoms you describe above could ever help. I "treat" as best I can with thyroid hormones, vits/mins/supplements and simply hope for the best. If I 'do myself in' with the stuff I take (I've been so very ill, including heart arrhythmia, being punch drunk with the cold and several of the above), then I did it with my own best interests at heart... not those of GP's and endos who simply have no clue and arrogantly do not care to have one.
How sad in the 21st Century that some of us are reduced to this!
yes pharmaceutical rubbish is extremely apt and the media support them as well as the governments and then there's the court system all are there purely to furnish the psychos with the publics money under the banner health care
I noticed you did not mention food in treating your illness this is pretty much where all our ailments start, if you feed your body the right stuff (and most definitely not from a supermarket they freeze there food if you have 80-90% water in a product ice crystals are formed and they puncture the cells and you lose the nutrients) you pretty much won't get ill and will be able to reverse the majority of illnesses, do not listen to all the gene BS that the above mentioned pour out in order to control you and keep you in fear.
the majority of the supplements are synthesized or taken from crushed rock both do not work long term and very few will actually be able to cure people but the right food and water (distilled) now there's the answer. I keep coming across various studies carried out on these synthetic substances and they are all bad and prove to take chemicals out of the cells or cause premature death over the long term.
here's the lowdown on Mitochondrial Dysfunction although I don't like some of the products they sell like the Vitamin D or the Ascorbic Acid I don't believe either of these are genuine
drmyhill.co.uk/wiki/CFS_-_T...
Do you use Hydrogen Peroxide there is an awful lot of rubbish talked about HP and all of it is based on assumptions and more than likely from pharmaceutical paid employees where as the scientific facts tell a completely different story HP has so many roles in the body it can help regulate pain and produce enzymes only use 35% food grade start with 3 drops in 5 or so ounces of distilled water no food 2 hours before and 1 hour after and if you are taking medication then 2 hours each side of the meds
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