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Thyroid UK
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Endos know their stuff .. NOT

I'm using this as a reason to show why this particular endocrinologist is convinced that depression and exhaustion is due to life style and not hypo thyroid related !!!!!!

He actually recommended I cease taking vit D3 or B complex and was convinced I was taking levothyroxine when and if I felt like it and fluctuating doses proved that ? In reality I was taking 100mcg of levothyroxine religiously for 5 years then had it withdrew for 6 months due to new doctors actually losing my complete medical history so refused to prescribe levothyroxine which resulted in my stroke which they still deny to this day that it was the withdrawal from levo ... consultant in hospital assured me it was that's good enough for me, what upsets me the most is me pouring my heart out to convince the div that I was clearly not converting and explaining the fact I have a severely disabled child with life limited illnesses so I needed to be in good health to look after him and he turned it round and used THAT as the reason I'm depressed and tired ??? How #@#@#dare he ??? He advised me to stop taking supplements as they are completely unnecessary ??? What ???? If all else fails we will try T3 ?? But it's very expensive so maybe not ?? I'm furious right now and would chew his leg off if he was in front of me right now ,,, I'm actually so upset I'm in tears , this was from a year ago I'm now sourcing NDT myself and feel better but not there yet and iv only today been given this report ??? Duncan brown shame on you for blaming my sons disability for the reason I'm ill when really it's clearly due to my hypothyroidism and bad management of my condition, as for the Fluoxetine better known as prozac he can shove them where the sun doesn't shine ... rant over ...

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Disgusting! I can understand you must be hopping mad. How dare this man call himself and endo? Or even a doctor? He knows nothing about anything.

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Plus I never did get the results of the 24 hour cortisol and vit D test they have vanished ? Im seriously considering moving to an area I know of that has a sympathetic surgery of gps that understand about thyroid issues and prescribe T3 I just want my life back I cant afford to be tired and brain fogged I have an important role to play in my lads life and at the moment I feel I'm not giving him the best I could due to this dam disease , it just sucks ..

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It does indeed.

Frankly, if you have the possibility to move to that area, then I would do so, if it were me. Learn all you can about your disease, it's very important that at least one of you knows what they're talking about. And if it isn't the doctor, it has to be you. :(

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I'm so sorry. Having been patronised in this way too, as many of us have, I just wanted to say I sympathise so much with how you are feeling at the moment. I sometimes make the mistake of getting emotional in appointments, which of course then gives them the excuse to blame it all on depression and anxiety. It's easier said than done, but it's not worth wasting your energy on this fool. If you can, try not to get upset or angry if you do see someone like him again, as it only seems to give them even more of a reason to treat us like hysterical women. Best of luck to you x

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Thankyou so much for understanding and kind words x

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I know exactly how you feel. They actually had me convinced that my anxiety and depression were well, anxiety and depression. Nope I have had hypothyroidism for around 12 years now and I know that when I feel physically well my mental health is not an issue. More recently I caved and went to see a therapist. He was so bad at his job that he actually accused me of being ‘under the influence of alcohol’ at 10am. FYI I don’t smoke and drink now only occasionally. When I went back (god knows why) but I did and he decided that antidepressants were worth a try. What year, century is this?

Apparently the pills take about 6 weeks to take effect. Really? six weeks of more useless meds. These doctors live in the pockets of the big pharmaceutical companies ☹️ 😢

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Absolutely agree I just don't see a way out of this nightmare tbh x

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Shocking but not surprising. I asked my endocrinologist about T3 at last appointment and was told flat out it’s only for people with thyroid cancer. Lost for words.

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Wow , that's shocking 😳

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What a liar. I admire your restraint. I think I’d have called him(or her) a liar to his face. 🤸🏿‍♀️

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I had a heated debate with him. I was there for my testosterone treatment and despite having testosterone levels lower than a 95 year old male at 35, and the testosterone gel guidance stating in black and white that the starting dose is 6 pumps a day, he started me on 4! And I ended up feeling worse than before. Researched online and guys with a higher testosterone reading than me were all started on 6 - 8 pumps per day and it was just talking to a brick wall. Thankfully now on injectable testosterone but dear god, where do these NHS doctors get trained.

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I didn't have the strength and at that time was on levo so it kind of makes you feel indebted to anyone that appears to empathise or understand but in actual fact they don't care or seem to have a clue , now I'm on armour it's a different story I know what's what and I stand my ground I know the only ones that talk sense are members of this group and I'm just glad I found it

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Is it any wonder why - when so sick and unwell - that no-one comes to our aid but why are they so cruel and unkind to patients who are relying upon them but have to plead for them to help them recover. If we, on this forum, can read and learn and are not qualified - why is it that those 'supposed to be qualified' have no proper answers to make the patient well again.

This is a copy (I don't have the link) and it is by an Adviser to TUK, before his untimely death. Anything he wrote was the truth who was more concerned with the suffering of those with any autoimmune diseases and not treated compassionately. This is a copy for your endocrinologist and maybe highlight those parts which are particular to yourself :-

" Increased Incidence of Disease and Medication Use Among Patients on T4-replacement ".

Researchers recently conducted the first large, community-based study in the UK of the health status of hypothyroid patients using T4-replacement therapy.[37] Compared to matched control patients, hypothyroid patients on "adequate" dosages of T4 had a higher reported incidence of four diseases: depression, hypertension, diabetes, and heart disease. Hypothyroid patients on inadequate T4-replacement (their TSH levels were elevated) also had a higher incidence of strokes. In addition, hypothyroid patients chronically used more prescription drugs, especially for diabetes, cardiovascular disease, and gastrointestinal conditions.

We’ve recently been consulted by many hypothyroid patients whose physicians have reduced their T4 dosages to extremely low amounts, in some cases as low as 25 mcg. The patients report to us that their physicians refer to reports by endocrinologists that TSH suppression increases the risk of atrial fibrillation three-fold. As I explain in Addendum 4, this is an unjustified generalization from a study of elderly (60 years of age and older) sedentary people. This misguided practice by physicians is likely to increase the patients’ incidence of coronary artery disease and cardiac fatalities.

The dosage of T4 that suppresses the TSH level varies considerably, but may be as much as 171 mcg or as little as 50 mcg.[56][57][58][59][60][61][62] Hypothyroid patients should be concerned when their physicians restrict them to lower-end dosages of T4. In one study, researchers used coronary angiography to assess the progression of coronary atherosclerosis in elderly hypothyroid patients. In 5 of 6 patients who kept their T4 dosages at 150 mcg or more, the disease didn’t progress. But in all 6 patients whose dosages were 100 mcg or less, the disease had progressed.[63] This study suggests that elderly patients whose TSH levels are suppressed by fairly low dosages of T4, and whose physicians insist on keeping their TSH levels within the reference range, may, as a result, have increased progression of coronary artery disease, leading to strokes and/or heart attacks. In that the incidence of atherosclerosis is high even among young individuals in modern societies, younger hypothyroid patients should be concerned over the possibility of lower dosages of thyroid hormone inducing or exacerbating atherosclerosis.

Dilemma for the Endocrinology Specialty

The four studies that are the subject of this document clearly show that neither T4- nor T4/T3-replacement is effective for many hypothyroid patients. The ineffectiveness of the two replacement therapies translates into three likely adverse consequencesfor these patients with inadequate thyroid hormone regulation: continued suffering from symptoms, susceptibility to potentially disabling or lethal diseases, and increased use of drugs to control the symptoms and diseases. The endocrinology specialty sets and maintains practice guidelines for the diagnosis and treatment of hypothyroidism; that it does so imposes upon it an ethical and humanitarian responsibility to expediently act to protect hypothyroid patients from the three adverse consequences. That responsibility is the compelling reason for the endocrinology specialty to promptly reform its incorrect official position that T4-replacement is safe and effective for all hypothyroid patients.

Many researchers, physicians, and patient advocates believe that the endocrinology specialty has been curiously obstinate in its advocacy of T4-replacement. Its obstinacy is evident in its disregard for the protests of thousands of patients and a growing number of doctors that T4-replacement is ineffective and harmful for many patients.

The specialty’s obstinacy may be sustained by financial incentives from corporations that profit from the practice of T4-replacement therapy. This suspicion of financial motivation is reinforced by the specialty’s standard method of enforcing the practice of T4-replacement among doctors: political tyranny rather than scientific argument and debate. The suspicion will only mount if the specialty—despite the recent studies showing replacement therapies to be ineffective[1][2][3][4] and harmful[37][63] for many hypothyroid patients—sidesteps the issue now at hand. How safe and effective is T4-replacement compared to alternate approaches to thyroid hormone therapy now in widespread use? For its own credibility, it is imperative that the specialty immediately address this issue free from prejudicial preconceptions.

References

1. Walsh, J.P., Shiels, L., Mun Lim, E.E., et al.: Combined thyroxine/liothyronine treatment does not improve well-being, quality of life, or cognitive function compared to thyroxine alone: a randomized controlled trial in patients with primary hypothyroidism. J. Clin. Endocrinol. Metab., 88(10):4543-4550, 2003.

2. Sawka, A.M., Gerstein, H.C., Marriott, M.J., et al.: Does a combination regimen of thyroxine (T4) and 3,5,3'-triiodothyronine improve depressive symptoms better than T4 alone in patients with hypothyroidism? Results of a double-blind, randomized, controlled trial. J. Clin. Endocrinol. Metab., 88(10):4551-4555, 2003.

3. Clyde, P.W., Harari, A.E., Getka, E.J., and Shakir, K.M.M.: Combined levothyroxine plus liothyronine compared with levothyroxine alone in primary hypothyroidism: a randomized controlled trial. J.A.M.A., 290:2952-2958, 2003.

4. Cassio, A., Cacciari, E., Cicgnani, A., et al.: Treatment of congenital hypothyroidism: thyroxine alone or thyroxine plus triiodothyronine? Pediatrics, 111(5):1055-1060, 2003.

5. Bunevicius, R., Kazanavicius, G., Zalinkevicius, R., and Prange, A.J. Jr.: Effects of thyroxine as compared with thyroxine plus triiodothyronine in patients with hypothyroidism. N. Engl. J. Med., 11:340(6):424-429, 1999 (Feb).

6. Bunevicius, R. and Prange, A.J.: Mental improvement after replacement therapy with thyroxine plus triiodothyronine: relationship to cause of hypothyroidism. Int. J. Neuropsychopharmacol., 3(2):167-174, 2000 (June).

7. Bunevicius, R., Jakubonien, N., Jurkevicius, R., Cernicat, J., Lasas, L., and Prange, A.J. Jr.: Thyroxine vs thyroxine plus triiodothyronine in treatment of hypothyroidism after thyroidectomy for Graves’ disease. Endocrine, 18(2):129-133, 2002.

8. Johansen, K., Hansen, J.M., and Skovsted, L.: Myxedema and thyrotoxicosis: relations between clinical state and concentrations of thyroxine and triiodothyronine in blood. Acta Med. Scandinav., 204(5):361-364, 1978.

9. Wilson, W.H. and Jeffereson, J.W.: Thyroid disease, behavior, and psychopharmacology. Psychosomatics, 26:481-492, 1985.

10. Lowe, J.C., Garrison, R., Reichman, A., Yellin, J., Thompson, M., and Kaufman, D.: Effectiveness and safety of T3 therapy for euthyroid fibromyalgia: a double-blind, placebo-controlled response-driven crossover study, Clin. Bull. My

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Wow that scared the hell out of me I had my first stroke age 49 followed by several T.I.As all according to my gp completely unrelated to my thyroid condition.. plonkas they are

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So sorry you have had to experience this. What a w*nk*r. How dare he try to blame your hypo symptoms on your personal circumstances - so it’s your son’s fault is it? Shocking, truly, shocking. I’d like to punch him on the nose for you.

As for the comments about T3, they are so paradoxical I can’t even follow what the idiot is on about. ‘We have to try everything else before T3 but then you might need T3, but then it might be withdrawn because it’s expensive so you can’t have it even though we’ve tried everything else and that didn’t work.’ WTF? In whose world does that make sense?

It really reads as ‘I’m going to make you ill, then you’ll be unable to cope and even though I know a treatment that may make you better, you’re not having it, you’re going to stay ill and not only will you suffer, your family will suffer too. And I’ll get out of treating you properly by telling you it’s all in your head (you mentalist) and giving you a really horrible anti-depressant with dreadful side-effects (ironically including depression and suicidal ideation) that is cheaper than the treatment that really could make you well.’ Arrogant stupid stupid tw*t. 🤸🏿‍♀️

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This actually made me giggle , thankyou for that , I haven't giggled in a long time , bless you, yes I think you basically summed that up perfectly, it's pretty disgusting really isn't it, I look like a 70 year old wrinkled prune yet just 4 years ago i was a model for "next" my gp has robbed me of a decent quality of life it's as simple as that , i now have to throw diabetes into the mix as I found out by chance last week that i scored 41 and 42 is diabetes, gp failed to tell me i found out whilst talking to my local hospital about my pre OP assessment for a minor OP I'm having soon and she said the results were sent to your gp 4 weeks ago , shocker , he never mentioned that

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I think you should complain about your GP not informing you of being a diabetic.

It is more than disgraceful.

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Thankyou I'm actually going to see him tomorrow unfortunately my gp only opens twice a week 😳

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