So, finally after many many years of being hypothyroid with all the classic symptoms severely incapacitating me so I cannot work (and thyroid disease running in my family) but all my various NHS GPs down through the years insisting my bloods was always borderline so basically anything was all in my head but here is some levothyroxine if you want it which always made me much worse, a kind GP who actually listened to me referred me to an endo based on my symptomology.
I saw them last week and have to confess I was not holding out much hope BUT Jeez. I am so angry now about being lied to. Either that or he is blooming useless. I cannot believe he genuinely does not know or could bare face lie to me.
He had a very pleasant bedside manner (smiling assassins do) but he acted dumb as if I was the only one who had ever reacted badly (let alone no improvements) to levothyroxine. Not only that but he had the audacity to claim that the fact levo did not make me better indicated my issues were not thyroid related at all as levo should help or do nothing, not make me worse!! Pull the other one.
He did then contradict himself later somewhat by saying I could try a different brand (first time I had ever heard of there being a diff between manufacturers, I was last on the awful Northstar 50s)
I then said about a family member being told she cannot convert T4 properly and I suspect I am the same so can I have T3 please and he ignored that and refused without giving any reasons except for the fact levo has not helped me so my issues are not thyroid related.
I said I know NHS does not prescribe T3 but is there anything you can recommend I can source privately and he denied knowledge of anything, merely saying if I bought NDT I would risk heart problems and osteoporis.
He dismissed me with a "I will do some more blood tests" (the usual NHS ones) but he said he did not realistically think he could do anything for me/not to hold out any hope. I asked about doing some free T3 tests etc and he refused saying nobody (in medicine) really knew what they meant.
What the heck? Are these guys trying to push me to slit my wrists?
Last TSH 6.9
T4 15.8
But severe symptoms for many years even when lower and it is only going worse.
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blogfrog
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I really completely understand how you feel. I have been in the exact situation. Levo any brand makes me feel dreadful to the point I can’t get out of bed with sereve muscle aches and fatigue. Worse than the normal fatigue I have from being hypo.
I saw an endo privately. It was shocking same thing as you that I couldn’t possibly react to levo as it is a hormone replacement. No other meds are available and that is that.
I am unable to work due to health problems but the main one is without a doubt hypothyroidism and hashimotos.
So I will tell you what I done to try and get better….
Done all my bloods on medichecks privately, saw Dr Frey at countryhealth. Got some NDT which is great but I do have heart problems which is is making a slight bit worse so I can only be on a low dose. So I went to a private pharmacist to get tirisont (t4 drug with minimal fillers). I am not on a low dose of NDT 1 grain, have added in 50mh of t4. I am still not great but better than I was. I do my own bloods every 6 weeks.
I figure even if I do get osteo problems or heart issues from T3 or NDT it is better than losing most of my life now, almost a vegetable who is bloated and obese. I have already lost 30 years of my life.
Yes I know that’s what I thought. Oh well if it knocks 10 years off my life at towards the end then fine. I would rather feel better now and have a life!
I would take him at his word - he is that ignorant. Most of them are. He's absolutely right, he can't do anything for you. He doesn't have the knowledge or the understandinf of how it all works. I expect he's a diabetes specialist, isn't he? Almost all of them are.
And, believe him when he says that ' nobody (in medicine) really knew what they meant.' I have had several doctors admit to me that they don't test FT3 because they don't know what T3 is and don't understand the results. He's not lying about that, as stupifying as that may sound.
And what he said about NDT is what they're all taught in med school. I know doctors do gaslight and tell an awful lot of lies, but in this case, he's not lying, he is that ignorant, I'm afraid.
OK, then, so one can't expect him to know much about thyroid.
Given his specialty - endocrinology - one would be justified in expecting him to know about all hormone and all homone-producing glands. But, they don't. It appears that the medical profession only considers diabetes to be a real problem. The rest is just whinging hypochondriacs making a fuss about nothing.
I can only suggest taking your health into your own hands. After my thyroidectomy back in 2015 I was put onto levo which made me feel very ill for six months. I then found this site and have never looked back. I source my own NDT which I have been taking for seven years now. I asked questions, read many answers and so have felt well for years now. I take a yearly private blood test which also shows how well I am doing. You could do the same, why suffer? When my first visit to an Endo who never even knew what Vitamins D was and had to look on her computer I knew that I had to act, for myself as no one else, apart from those on here would.
Yep, am gonna have to. I am just wary of buying stuff from web as it may not be what supposed to be packed with poison and I wanted to do things properly. But all the private UK endos I have googled seem either very expensive quacks or just as bad as NHS ones. The one I saw is also a private endo at local hospitals.
If anyone can point me to a good source of NDT (or cytomel) without prescription please do so privately by PM. I used to buy T3 from a bodybuilder am no longer in contact with and I was a totally different person on it but who knows if I was damaging myself. But I was slim and not bloated and had energy then and my feet could wear shoes!
I took T3 for around a year (Cytomel) and took it without levo or anything else except vitamins and was a different person on it. One pill a day. I cannot recall the dose but it is what I was advised by bodybuilding expert as lowest 'safe' dose without wrecking thyroid (I am not a bodybuilder nor do I use the gym but that's who sold it to me!)
If I recall correctly through the brainfog I think I cycled it so one month on/then off.
My weight stabilised on it when eating normally (albeit still very low cal as years of starvation have wrecked my metabolism) and I could lose weight if dieting without the rebound. All the water retention went and had energy and was "normal" - my old self. I would still take it now but lost my source. I got it from a bodybuilder.
I bought some Tiromel online a few months ago from the web but did not get the same results, so much so I discontinued using it. I cannot be sure it is real although the site I sourced it from had good reviews but who knows?
I sourced these with zero help from the NHS and without telling my GP who would only scold me like a naughty schoolgirl.
>>How much levothyroxine were you taking... How long at highest dose
I only took the Northstar for around two weeks at 50 mcg a day before ditching it as I felt so bad on it. Crushing depression that came out of nowhere, the lowest I have ever felt, just like the baby blues a few days after having my son that very almost had me topping myself. I knew it was chemical as I was so teary and I am never that way (although I can feel low/anxious). The awful irrational feeling went within 24 hours coming off the levo.
Previous attempts at levo (not sure of brands or dosage) had never caused this but they made me a lot more tired and achy (bed bound), so bad I discontinued within a week or two each time.
>Please add results and ranges
My latest results were TSH 6.9 and T4 15.8. I was told my antibody levels was of no concern but have not been given those results, it was a struggle enough to get these results from my docs.
I do have somewhat elevated longterm CRP which docs never mention of concern but I know enough to know it may indicate possible chronic inflammation. I also have low iron feratin levels that never corrects with iron pills. B12 am not sure of levels but was told was ok by doc.
>Have you had thyroid antibodies and vitamins tested?
Yes in so much as the NHS/GP will do and was told they were ok albeit also was told that when my TSH was not. It is hard to get the data from my GP - very snooty receptionist who makes things as hard as possible to get told it.
Thyroid disease does run in my family. I am obese and docs clearly don't believe me and think I am a fat lazy cow in denial when I tell them I can eat sub 400 cals a day and low carb with intermittant fasting and still gain weight. I have put on 6 stone in two years. I also have dreadful water retention. It does not help I am now that age that everything gets dismissed as the menopause which has made things ten times worse for me. I am on HRT which helps some but not weight etc.
I have noticed I am much better without gluten/dairy. In fact when literally starving (fasting or ultra low cal) I am always miles better and can't sleep and my body is literally buzzing all the time (adrenals??)
Eating an inadequate number of calories leads to poor conversion of thyroid hormones and running on adrenaline
You need good, nutrient dense diet and plenty of it. Lots of good fats, good protein and wide variety of veg and fruit. Fermented foods like kefir, sauerkraut, kimchi etc
Intermittent fasting heightens mental focus and adrenaline and noradrenaline levels, many people notice that fasting gives them energy and cognitive sharpness. Plus your body isn't diverting energy away from your brain to your digestive system when you're not eating.
It's believed its a survival mechanism, in the dim and distant past we had to hunt and forage for food, no Tescos back then. No good hunting for food or being hunted if you were sleepy and lethargic. Some people finds it suits them. I've used it for years but it's not for everyone.
Is thyroid U.K. gathering this and other experiences of patients being outright lied to - as well as patronised?
Could we and the thyroid charities fundraise to cover the cost of private endocrinology appointments being carried out in old air craft hangars (or defunct Nightingale hospitals!) - as in the U.S., in areas of poverty / poor Medicare coverage - where caring doctors can see and advise the huge numbers of older women who are being told to expect substandard health as the norm and thereby not allowed to feel well for the rest of their lives?
It is criminal that women are expected to put up with this state of ill health day after day, year after year, when we know that they can feel better when adequately cared for and medicated. It is also sexist.
An expensive minefield, yes. And our thyroid patient peers are being shortchanged and / blown up all the time in it.
Admission to advise would have to be assessed and made on the basis of Gold Standard criteria - eg. willingness to treat with methods other than levothyroxine monotherapy and to treat and adduce symptoms, not merely TSH numbers.
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GP wants me to reduce my dose but endo said its fine.
I have the Hashimoto disease since 99.. But my Gp refuses to write me a referral for an endo!!?
Please advise on Blue Horizons Blood Test Result (includes Cortisol). I need to be fighting my corner with GP against recent awful Endo!
Need help understand my medicheck results 
NHS Endo agreed to trial T4/T3 advice please. 
