Has Your Get Up and Go Got Up and Gone?
Are you tired of hearing that “nothing else can be done for you?” Are you tired of hearing “you are depressed and would feel better if you lost weight”? Are you tired of getting rushed in and out of your doctor’s surgery…each visit, walking out with a new prescription for one of your many symptoms and being given NO ANSWERS. Your medication dose increases/decreases…but you continue to suffer the effects of low thyroid function – but nobody listens?
So what’s important when it comes to diagnosing thyroid problems? Is it the symptoms of thyroid problems, family history, physical presentation, or should more or less weight be given to the serum thyroid function tests, i.e. TSH, fT3, fT4?
Before answering, let’s look at the patients’ and the doctors’ points of view.
In order for a patient to tell their doctor about their symptoms of thyroid problems, the doctor needs to spend time with them, as well as listen to their story.
But many doctors do neither, so it can’t be very important, right?
Patients may subconsciously be persuaded to feel that maybe it isn’t that important and take the doctor’s word or their actions as reasonable – and after all, doctor knows best – doesn’t s/he?
What about the doctors? They listen to patient’s problems all day long. Some problems are real, some are not and some are unfathomable. They don’t have time to sort out what’s real and what’s not, so, the best way is to rely solely on laboratory testing (because lab test never lie, right?).
So doctor and patient accept that the laboratory tests are the way to go.
Wrong!
This has huge implications for those with symptoms of thyroid problems. A huge problem of under-diagnosis exists for such patients when a doctor relies on TSH as the only marker for thyroid dysfunction. Truth be told, this test is very inaccurate and serves better as a secondary marker for the diagnosis of thyroid problems.
Far superior ways to assess thyroid problems are:
- symptoms of thyroid disease
- signs of thyroid disease
- family history of thyroid or autoimmune disease (especially your mother)
- low basal temperature upon waking
- Iodine deficiency So here’s the solution: Thyroid Patient Advocacy feels the time is long overdue for the medical profession to change their current way of thinking and are campaigning to get the current protocol regarding the diagnosis and treatment of hypothyroidism amended. In TPA’s efforts, all endocrinologists and GP’s are being urged…2. To use the following laboratory tests as a guide in the assessment and treatment of those with symptoms of hypothyroidism: TSH, free T4, free T3, TPO antibodies and Tg Antibodies. 4. To listen and give more credence to patients’ subjective reports of symptom continuance or resolution, rather than make laboratory results the sole guide in dosing. Moreover, TPA advocates that doctors should have freedom of choice in prescribing T4-alone, combination of T4/T3, T3-alone or natural thyroid extract.
- To start combined treatment at a safe low dose of T4/T3 synthetic combination, or, if thyroid extract is prescribed, doctors should familiarise themselves with the equivalence of this medication compared with thyroxine and begin treatment on an appropriate safe dose, adjusting the dose according to the patient’s clinical needs every few weeks.
- To screen patients with thyroid deficiency for low adrenal reserve, a condition that may be more common than generally expected. Patients with weak adrenals may have difficulty tolerating the dose of thyroid hormone they need, and may experience apparent “hyperthyroid” symptoms, even at low insufficient doses. In other patients with low adrenal reserve, the problem may be the opposite: the patient may remain hypothyroid even at higher doses of thyroid hormones. Thyroid hormones cannot normally be used by the cells and may instead build up too high in the blood, leading both doctor and patient to believe that a particular dose is too high and that the treatment doesn’t work. The solution to both problems is treatment of the low cortisol condition, prior to the thyroid treatment, or simultaneously.
- Once the diagnosis is made, it is again the symptoms of thyroid disease and physical presentation that are the ultimate markers of improvement. Laboratory tests are still unreliable on their own, and should serve as secondary markers (but be assured, thyroid function tests do have a purpose).
See the ‘TPA Register of Counterexamples to T4-only therapy’.
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Previous comments
I have just joined and would like to know where I can get Natural Desiccated Thyroid? I have a private GP so he would probably be willing to give me a prescription but what chemist can I take it to? I live in North London. I have been on Thyroxine since I was 20 (now 69) and now feel as though I am running on empty and overweight……
I have just joined and would like to know where I can get either WP Thyroid or Nature-throd from. I have an understanding GP who is willing to give me a prescription but where can I get it from in Argyll Scotland. I am 68 and have been on Thyroxine for 30 odd years and feel I would like to be able to have a productive life for a while before I die
Have Graves’ disease over four years treated with RAI now on levothyroxine 125mcgs feel constantly fatigued weight gain aches and pains . Hot flushes etc.
Live in Wiltshire area anyone know where I could get a sympathetic GP to prescribe natural thyroxine as would try anything to improve my QOL . Is it safe to buy natural thyroxine on line as I am desperate.
Kind regards annie
Hello Anne
I have found a naturopath in Cheddar that prescribes NDT , please private message me
Hi I have just joined. The reason is because I’m getting very frustrated with how I’m feeling eg: sore, lack of concentration, tired all the time, forgetting things, bad sleep pattern, lack of feeling for anything. I have been like this for years and I need help. The doctors keep telling me the usual and giving me antidepressants……not helping! My husband wants his happy bouncy wife back, I want to be that person again. Where do I start and how.
Thank you chipmonk
GP has said that my blood test results are normal and advised me to search the internet for information. Still feeling ill with fatigue, weight gain, muscle aches and cold intolerance.
Where can I go for answers
You can ask questions in the forum attached to this website.
Hi there,
I have hypothyroidism, after having a total thyroidectemy. I had been taking the brand eltroxin but that was changed to the generic levothyroxine and havent been feeling well.
Has anyone else experienced this?
I have all the symptoms of Hashimotos but have never had a diagnosis, mainly because after reading and researching I understand that a regular doctor won’t be much help.
Where do I start to get help? Do I see my doctor first to get blood tests etc. or find an integrative doctor who would know what the best treatment is, feeling confused.
You could maybe join our forum, where there is a wealth of experience.
Please can someone advise I think I have adrenal fatigue despite taking NDT and a recent blood test indicating hypothyroidism
Rosie, this isnT the place to ask, you need to go to the fourm and ask questions there.
Had hashimotos for over 20 years been treated with levothyroxine but have never been well. Now have a shake that comes and goes. Have had out of range readings of T3 for at least 3 years. GP from NHS will not prescribe NDT for me. Referred to private doctor from NHS as asked for NDT but took my money and refused to go against NHS but said I should see neurologist for mri and liver specialist as readings not right. Have lost all faith with them and make me feel like a hypochondriac. Looking for someone who listens to how I feel.
Suggest you join our forum where people exchange all sorts of information.
I have just joined and am so glad I have found this site because I really am at the end of my tether, have been feeling so unwell for so long now and sick to death of being told all my symptoms are caused by stress, anxiety and depression, I was even told by a doctor every single one of my symptoms are psychosomatic. I am stressed, anxious and depressed but they are all symptoms of feeling so unwell not the cause. I have had hypothyroidism for 16 years, 10 of which were symptoms free, the last 6 have been a total nightmare. I have learnt a lot on my first visit at least I know I’ve got some decent reading material for my night’s of insomnia lol. Seems to me that the medical profession don’t like the fact that we can all learn about and understand our own conditions and are completely arrogant to the fact that we might just understand our own bodies and how we are feeling a little more than they do!
Hello, have just joined TPA, generally looking for advice as am clueless about where to start. Thyroid issues were originally picked up during private fertility treatment a few years ago (normal T3 / T4 with raised TSH) and prescribed Levothyroxine to reduce TSH before starting IVF. IVF was unsuccessful after two rounds and could not afford to continue the 8 weekly private appointments to stay on Levothyroxine. TSH is now up again (as of last summer) but GP will not treat based on TSH alone and a bit lost about what to do, particularly as symptoms have worsened after three month weight loss diet… hair loss the size of golf balls when I wash it, eyebrows, lashes, body hair going too. Fatigue, heart palpitations, skipped heartbeats, raised cholesterol, restless legs, fatigue, poor memory, constipation, irritable, tearful, dry skin the list goes on. Any recomendations on where to start in terms of investigations to establish root cause would be most gratefully received. I don’t appear to have Hashimotos as thyroid antibodies were in normal range (although have been experiencing some pain in throat over last few months that isn’t related to a cold or flu). Reverse T3 ratio was also not good. Many thanks
Just read through the article ‘ has your get up and go gone’ I think I’m finally on a site that is on the right page ! Hallelujah- can wait to get on the forums
How can I get T3? 10 yes since diagnoses, HRT specialist Dr helpful but need specilist thyroid.. Fat and worn out… 55 busier than ever at work.. No retirement!! Need to keep well.. Just joined after hearing last word radio 4….what a woman she was!
I have just joined and would like to know where I can get either WP Thyroid or Nature-throd from. I have an understanding GP who is willing to give me a prescription but where can I get it from in Essex. I am 61 and have been on Thyroxine for 40 odd years and feel I this treatment would really help me. Thanks
Hi. This is my first post.
I was diagnosed with a hyperactive thyroid and Graves’ disease about 16 months ago. I lost weight but now have put it all back on, plus more. Carbimazole caused issues so I was put on PTU. My thyroid is not behaving and my doctor has said it’s my choice of RAI or an operation to remove all the thyroid. I don’t want either.
Does anyone know if there are alternative herbal/natural remedies which might work?
Also, why is it I’m putting weight on with an overactive thyroid??? I don’t eat any more than I have done, in fact I probably eat less and exercise for at least 2 hours a day!
TIA.
Sam.
I am suffering with symptoms of hypothyroidism and on levothyroxine 150mcgm / day for 20 years. I’m now 54.. my symptoms seem to be worsening. My TSH levels this week were very low ( 0.05) indicating hyper! I have been referred to see a specialist in 3 months and want to be as prepared as I can with understanding and questions. Any help / advice would be very much appreciated as I feel my symptoms are getting markedly worse and all other blood test repeatedly come back as normal so no inflammatory disease etc.
Hi I am new to this group,and thanks for letting me join. I like many others who have on going debilitating symptoms and currently on thyroxine medication. My thyroid problem started about 20 years ago although only been on medication 11 years as was constantly told it wasn’t my thyroid because of tsh blood results in range. Over the past four years my condition has worsened again trip after trips to doctors for answers as to why I feel so poorly.blood test after blood test and nothing has significantly showed up apart from slight vit d and prediabetes. I am basically housebound because I have problems walking along with other debilitating symptoms. I have just turned 60 and feel very much like my life is over I have come to believe that doctors are absolutely useless I have no Faith in them whatsoever and feel like screaming with frustration. Something needs to be done as to this impossible situation. But don’t know where to start or have the energy for the fight ahead, I have stopped going to doctors as I feel it is useless,VERY annoying, and frustration.
I went to my doctors this week for my blood test results and was told everything was ok. I asked what my T3 was and she said it was 1.6. I am still absolutely exhausted and on Levo 175mg but am still completely exhausted. My heomaglobin was low and I couldn’t give blood recently and I have P.A.
I have been on Levothyroxine for the past 6 years and it levels me out, but I feel so far from normal that it’s awful. Can I get a prescription for NDT from anywhere?
Can someone look at my results please and advise? Finally got my blood results but done in Hospital not by GP . I have been on Levo alone for 45 years after RAII ( not for Graves Disease but , I was never told why!) Because I have no Thyroid, I amconcernd about T3
The following are the latest results from NHS lab in Hospital –
TSH 20.3 ( measured in a different form from usual ( last result was 0.01 and done by GP)
Free T3-0.06
Vit B12 -488
Folate 5.9
Vit D( Calcium?)2.39
Ferratin 143
GP says all these are fine, and that I am just slightly overmedicated. I am a bit confused as the Hospital measures THS differently to what I am used to . Can anyone help please?
Hi everyone, it’s so good to find people in the same boat as me.
I’ve been hypothyroid for about 15 months on 125microgrammes of levothyroxine. My weight is dreadful, terrible pains in my feet and arms, dry eye and skin, anxious, depressed etc.
Just had thyroid antibody blood test but haven’t had results. Had ultrasound and found lymph nodes enlarged so having another scan in 3 months.
My doctor doesn’t seem interested and seems to switch off saying he can’t do anything else.
I used to be such a fun loving person and now that person has gone.
Please does anyone have any advice. I’m 56 and can’t go on like this.
Thankyou
Hi
I have tried for years to get my doctor to prescribe Natural Desiccated Thyroid (NDT) I showed him articles and research yet when I asked for NDT via named patient basis or compassionate basis he just refuses Women are 10 times more likely to have under active thyroid problems than men so it seems we are not listened to.
I have been under the hospital for two years with underactive thyroid and Hashimoto’s disease I have tried different brands and amounts of levothyroxine with too many side effects I have tried Liothyronine in different doses I did feel better but I had heart palpitations, despite having -11 TSH I have now been discharged as I refused to take Liothyronine with beta blockers and they could not/would not give me NDT?
I questioned why I couldn’t have NDT, the NHS only changed to Levothyroxine in the late 1970s because it was a cheaper alternative and NDT has been with us since the 18th Century, probably longer in China.
It is a fact that most people feel better on Natural Desiccated Thyroid, recent blind studies have shown that people prefer it.
I am taking risks with buying it over the internet, I would feel safer buying prescription NDT.
Local chemists have been checked to see if any doctors are prescribing NDT, with no luck.
Any suggestions welcome.
Please can someone advise where I can safely buy Amour Thyroid without a prescription please?
Hello everybody, I am new to this forum and just registered .I am quite confused about the GP handling of Thyroid Patients in the UK ,I recently was prescribed Thyroxine again by my wish from my GP as I felt still symptoms after doing my basic Thyroid blood test with the NHS, where they said all is fine no need for further action, but i did another private full blood test for the thyroid and my TSH there was not normal and my antibodies were high .I got diagnosed with age 17 in Germany with Hashimoto and since then always took Levothyroxine until I stopped 3 years ago by my self and took natural Tyrosine, only until I experienced more symptoms again sadly .So I had to go to the GP here eventually but the Test is so basic and not helping me at all .So what brings me to this forum is the hope to find someone who knows where I could find a doctor or place to finally get a NDT prescription which was highly recommended to me by fellow thyroid Patients who have much more success and lowering symptoms with NDT compared to generic Levothyroxine .Happy to interact with fellow thyroid patients here ,kind greetings Daniela
This may well be out of order but I am desperate as my Armour Thyroid is stuck in customs.
Can anyone advise or offer tablet sharing , that will be returned..
The only way I can activate Levothyroxine is by taking a tiny bit of Armour. So without Armour am now virtually Unmedicated..
My GP is aware of the problem, but does not prescribe Armour, however he fully supports my medication regime.
Have fingers crossed alongside my life that this is an acceptable chat