A friend

[Bigthensmallthenbig]

last Saturday night we went for a lovely Thai meal with a couple who we hadn’t seen for a while. (Since I began my own thyroid nightmare).

The lady has had a lifelong battle with obesity, has had a gastric reduction, eats very little and is still, sadly very obese.

I can empathise with this but was alarmed to find out that as part of the weight loss battle she had been diagnosed as hypothyroid. As you can imagine, this revelation made my ears prick up.

She told me that she was on a very high dose of T4 (275 mcg I think) but it made no difference either to weight loss or physical or mental wellbeing. I asked if she’d had ablation: no. She then went on to tell me that she had a friend who’d got hold of this magic elixir. The friend had struggled with weight all her life too and was also on levo but this new pill had transformed her life.

I took steps:

First things first: I put her onto this group. (I hope she has joined). I told her there is a place where you will be heard and supported.

Then, whilst I wolfed my meal as she poked and nibbled at hers, I told her about T3.

She’d only ever been measured for TSH and T4 she thought.

Her TSH had been 100 at one test, she thought.

I then got angry because she told me she’d been put off going back to her Endo because he had said she was fat because she was greedy and ate too much.

Then she cried again.

We discussed the possibility of under the counter T3 supplements but I told her not to as T3 is so much more potent than T4. I made her aware that through Thyroid UK she would be able to access an Endo who isn’t a nasty , self important, little man with a huge superiority complex and that the first step should be TFT’s with FT3 and no excuses from the gp.

I found the experience sickening and it reinforced my view that the treatment of thyroid malfunction in this country is scandalous. It further reinforced my belief that the mainstream guidance on mono treatment (T4), TSH being the god result and misdiagnosis particularly of women prior to thyroid being considered must cost the NHS billions.

I will pester my friend until she’s on here.

Rant ends

[Forestgarden]

I agree its a scandal. I too have pointed several people in this direction... including the nurse who took my bloods last week who was clearly under medicated and had been told her results were 'normal'. Makes me want to scream!

[DippyDame in reply to Forestgarden]

It's hard to comprehend why so much ignorance is causing so much misery...

[DippyDame]

She needs to have FT3 included in testing

275mcg levo is a massive dose and that can cause other problems.

I'd guess she has impaired T4 to T3 conversion resulting in low FT3 and consequently low cellular T3.

Briefly...If T3 is low this impacts on metabolism slowing it down with the result that calories are not adequately " burned off". This results in weight gain.

Thyroid weight gain is not the same as overeating weight gain, and dieting can make little difference

A TSH of 100 should ring alarm bells with medics....it should be 1 or under if correctly medicated

She needs to consult a knowledgeable endo who will prescribe T3...TUK can provide such a list, contact the office

[SlowDragon Administrator]

I utterly agree

I don’t go anywhere socially where I don’t meet at least one person, often more who are hypothyroid and either on grossly inadequate dose, dire vitamin levels, etc etc

At my art class of 18 people

1 autoimmune Hashimoto’s….had dose levothyroxine reduced from 150mcg to 75mcg based solely on TSH. She kept passing out/falling over, terrible depression. Got full thyroid and vitamin testing….all vitamins dire and Ft3 significantly below range

1 post RAI ….taking levothyroxine at same time as PPI and statins. Vitamin levels dire. Significant improvement by implementing correct timings and improving vitamins

At WI

County President severely hypothyroid/Hashimoto’s. Whole case terribly mismanaged

Her daughter in secure psychiatric unit with Hashimoto’s. Again dire management

Another member arrived walking with sticks. 6 months previously her thyroid tested late afternoon and dose reduced as result. She hadn’t correlated the immobility with dose reduction. Dramatic improvement with original dose reinstated after she tested correctly privately and improved terrible vitamin levels

None of these people had any help at all from any Medics

Only by talking to me, did they make progress…..first getting full testing privately and joining this forum

This is a scandal of vast numbers…..lives blighted completely unnecessarily and enormous and unnecessary cost to NHS/tax payers

[Anthea55 in reply to SlowDragon]

And this is exactly why we all need to sign Dr Pete Taylor's petition for funding for thyroid research.

petition.parliament.uk/peti...

Currently just over 8,000 signatures.

[Bigthensmallthenbig in reply to Anthea55]

Done

[Noelnoel in reply to Bigthensmallthenbig]

I don’t know what a gastric reduction entails but is it possible that it has interfered with her ability to absorb nutrients and medication

[Bigthensmallthenbig in reply to SlowDragon]

Her daughter in secure psychiatric unit with Hashimoto’s. Again dire management. There but for the grace of… the locum who realised I was mad because of my thyroid. Jeez, what’s wrong with these people? They are just people but they think they are infallible and to be worshipped not questioned. Haven’t met anyone yet that has a clue

[Bigthensmallthenbig in reply to SlowDragon]

Yup

[Stills in reply to SlowDragon]

Why is thyroid disease mistreated? The vaginal mesh sufferers are seeking compensation, the Thalidomide scandal remains a scandal, there are new drugs for obesity….. is it lack of interest in R&D so no advances are made? That seems unlikely as pharmaceutical companies want to make breakthroughs and money. Is it that the controlling powers , NICE, NHS, Government, GMC and so on don’t want to test, treat and cure sufferers and if so why?

[arTistapple in reply to SlowDragon]

In my rare outings (I talk about hypothyroidism to anyone who listens and often those who don’t) I find similar results. I come across people who think they are ‘fine’ even still think their doctors and the NHS are Gods, whilst they are hugely obese and can’t get around worse than myself. Are they part of the so-called 80% doing ‘fine’ and especially happy with their treatment?

[SilverAvocado in reply to arTistapple]

One of the many shocking things about it is that people very ill with thyroid will often tell you they are fine. Then you talk to them in a bit more depth and find their life is in ruins. It's a very strange.

[Bigthensmallthenbig in reply to SilverAvocado]

I’ve been quite frank with my gp re the detrimental effects on my business. He brushes over it. I’d have thought, such feedback from a patient should guide the nature and urgency of treatment

[SilverAvocado in reply to Bigthensmallthenbig]

When I first became ill with thyroid cancer, I had to stop working. I thought that would be of interest to the doctors, and I started asking every doctor I met when they expected me to be able to return to work.

What I found is they don't care at all about things like that, and they barely take notice of it. When I became so sick that I wasn't able to take care of myself properly, they also didn't care or give me even a tiny amount of guidance or advice in how to cope with it.

I think they actually become very skilled at brushing us off and getting us to shut up about things.

[arTistapple in reply to SilverAvocado]

They are absolute experts at brushing you off. However I find if I complain vociferously about my heart I do get treated differently. It’s the thyroid thing that gets the brush off. We are a pain in the you know what for that ailment.

[arTistapple in reply to SilverAvocado]

I think I might have done this a good few times myself before diagnosis, as I had no idea what was going on.

[shaws in reply to SlowDragon]

It is a disgrace that a medical person is completely ignorant - especially about the cliniical symptoms that could arise (if underdosed or overdosed). After all I doubt that a dysfunctional thyroid gland is 'rare'.

I know many are and if you click on my name you can read my experience.

[SlowDragon Administrator in reply to shaws]

After all I doubt that a dysfunctional thyroid gland is 'rare'.

There’s over 2 million people in U.K. on replacement thyroid hormones on NHS

Even by official guidelines it’s stated that 10-20% don’t recover on just levothyroxine

That’s 200,000-400,000 lives ruined

And many many more of the remaining numbers so called “well” on levothyroxine could have their treatment MUCH better managed

And, as we know from this forum, there are many, many thousands more who either can’t get diagnosed at all or are self treating after complete lack of adequate medical care

[Bigthensmallthenbig in reply to SlowDragon]

My GP will fall back on my AF during my acute graves stage as the excuse not to risk upping the dose. He refuses to recognise that I’ve had AF for most of my adult life, or to do anything about it. They are an odd, hypocritical, bunch: GP’s

[Litatamon in reply to SlowDragon]

'Another member arrived walking with sticks. 6 months previously her thyroid tested late afternoon and dose reduced as result. She hadn’t correlated the immobility with dose reduction. Dramatic improvement with original dose reinstated after she tested correctly privately and improved terrible vitamin levels.'

SlowDragon,

If you do know, would you be willing to share what type of hormone your friend is taking. Is it T3, NDT or some kind of combination therapy? It is pertinent to an aspect of my own health I am trying to unravel. Thank you in advance.

[SlowDragon Administrator in reply to Litatamon]

She’s only on levothyroxine

[Litatamon in reply to SlowDragon]

Very helpful SlowDragon. Do you happen to know if she saw a substantial raise in her ft3 levels when she went back to her increase of levothyroxine?

[SlowDragon Administrator in reply to Litatamon]

Sorry no I don’t

She was on 150mcg reduced incorrectly to 125mcg

Her face became moon shaped on lower dose too

[Litatamon in reply to SlowDragon]

Thanks anyway SlowDragon. Yes, I know that moon face. It seems to be leaving me right now, so I am getting optimistic. Same with changes in eyebrows. I get scared to get optimistic at times - laughing, but am nonetheless.

All the best to your friend.

[Bigthensmallthenbig in reply to Litatamon]

I thought I was heading for the sticks for the few years. If it hadn’t been for this group I’d probably have given up trying. The understanding gleaned herein, has helped me to battle on. The revelations keep coming, the understanding and resultant empowerment give motivation and direction.

[Litatamon in reply to Bigthensmallthenbig]

How wonderful for some insights and others to come. I missed this post when I answered the other, happy to hear. ❤️

[SilverAvocado in reply to Bigthensmallthenbig]

Sorry to ask a bit of a tangential question, but what do you find sticks useful for?

I can't walk far, and have tried to make a stick work for me, but I struggle to figure out how to get the best out of one.

I have actually broken a bone in my hand from leaning hard on a stick, so I figured out they are not really to help hold up body weight. So are they more for difficulties with balance? Or to take just a little bit of weight off, but not as much as I tried to do?

[SlowDragon Administrator]

one of my most prevalent symptoms, when under medicated is poor mobility, especially left leg limping

So as this is a “visible” condition many people would ask what had I done to my leg……I would reply ….it’s down to my thyroid levels

That would almost inevitably result in learning someone in the group was on levothyroxine and remaining very unwell…..but usually with invisible symptoms

Several thyroid patients who knew me from before I went gluten free in 2016, have now similarly gone gluten free because they are so astonished at how drastically my appearance improved on gluten free diet …..

and similar improvements happened after giving up dairy in 2022 ….though less people generally prepared to try or stick on dairy free

[Litatamon in reply to SlowDragon]

IVery interesting SlowDragon, I had over thirty symptoms when my b12 deficiency was found. At least 80% went POOF very early on with supplementation (b12 shots).

My legs were not one of them. Foot drop disappeared. But mobility did not change and this was so clear as I was someone who walked for hours and bounced up & down subway steps.

When I could afford T3 here (Canada) I could have sworn I had a jolt to my legs about a week after adding t3, but then it disappeared &I wondered if was simply that my body needed the extra t3 in so many places that it was not concentrated on helping my legs anymore.

It is a mystery I am still unravelling I have had sepsis twice and some are 'it might be something you're not getting back". But I am not there yet and certainly not since I know I felt a jolt for the better that one time in my legs.

(And I keep telling anyone who will listen that there is zero atrophy, so the answer is not there.

[Bigthensmallthenbig in reply to SlowDragon]

Yes. I limp regularly because of foot pain. Prior to trusting the system, I didn’t. I jogged places and regarded stairs as a target to be gleefully vanquished. I want it back so much.

[Litatamon in reply to Bigthensmallthenbig]

Sighing, really hoping for you. It is maddening. Perfectly said about bouncing up and down stairs. At times I can still remember the feeling , it is and was joyful. I used to regularly do HIT routines. Now standing for a shower is a feat.

It can make me so sad at times. Last weekend I looked after a puppy and walked him with a cane, stopping to sit at times. Let's just say he thoroughly enjoyed the cane, 🤩 I did not.

[SlowDragon Administrator in reply to Bigthensmallthenbig]

Heel pain?

Plantar fasciitis

Extremely common with low vitamin D/low Ft3

Many mentions of plantar fasciitis on the forum

[Stills in reply to SlowDragon]

Interesting about the limping. According to my GP I’m sub clinical and she won’t discuss it with me saying there’s nothing to be done.

In October 2020 I badly injured my leg muscles but lockdown prevented hospital visit. Long story short I still limp and am still in pain even after some good physio and regular swimming although it’s vastly improved since the injury date. Physio lady said it’s likely my chronic AI rheumatoid condition is preventing full recovery with Enthesitis now present and Tendinitis. Reading here that mistreatment or in my case no treatment can cause limping I’m now wondering if my leg should be considered part of a thyroid issue?

[Bigthensmallthenbig in reply to Stills]

I don’t know for sure but gout is reputed to be a possible side order with hypothyroidism. What I do know is, my feet swell and ache without warning. I’ve only learnt only recently through the group that, post graves, gluten free is the way to go.

As long as the current nice guidelines are adhered to so slavishly, there will be many who never connect thyroid to their symptoms or, that are even diagnosed.

I think it’s a shame that some doctors want all trimmings that come with implied intelligence of achieving their professional status, whilst not taking the responsibility to continue to develop professionally to a level adequate for patient care.

It’s all very well referring but once it patently has not worked, at least Google.

There’s an unfortunate tendency to close ranks too. Thus forcing the willing patient down a cup-de-sac. Nowhere to turn.

[Stills in reply to Bigthensmallthenbig]

Well put; cul-de-sac is my position exactly. I will have to try the gluten free route but not sure how to start. I have a bread maker so that’s the obvious route, I can leave cakes and biscuits easily enough and other than that I don’t consume much gluten. I believe porridge is gluten free so that’s easy to eat. I’m a savoury and dairy eater.

If I was a GP I’d want to educate myself for advancement and to achieve results for patients. Perhaps we expect too much these days. I did say to the locum ‘I haven’t always felt so unwell, I know I can feel better than this , is it too much to ask to want to be well when you’re saying my tests are clear’? Her response was to say make another appointment as my time was up.

[Bigthensmallthenbig in reply to Stills]

I discovered nachos are gluten free! I’m not sure that’s a good thing.

“is it too much to ask to want to be well when you’re saying my tests are clear’?

This is really well put. Might steal it if you don’t mind 😊

[Stills in reply to Bigthensmallthenbig]

Just reading your bio actually. It’s all relative when it comes to weight though. I’m 61, 5 foot 1 and was 9 stone 12 in February with Dr saying I was clinically obese - yes really. I lost 16 pounds in 3 weeks when this malaise started and it’s stayed off. Tests showed high cholesterol, I guess that’s the dairy so not a bad thing. However despite what the scales say I feel bigger than when I was 9 months pregnant. The bloating gets worse as the day goes on hence it must be bread and cereal at breakfast….. who knows.

Apparently rice cakes are gluten free and I love them, salt and vinegar and the caramel are scrummy.

One thing I’ve really noticed is loss of libido which until February when this started was good. Fatigue is the killer!

At least when my joints hurt from my rheumatoid condition it lowers my appetite and constant migraine also stops me eating. Every cloud…..

[Stills in reply to Bigthensmallthenbig]

No bio but read through your posts, tough times, I empathise with you.

[Bigthensmallthenbig in reply to Stills]

Feel like I’m getting there. Slowly. Thank you

[Litatamon]

I just happened to be sitting beside a pharmacy counter this morning. It was obvious a husband was picking up for his wife or some loved one. The pharmacist was going over the change of dose in all the medications. And I heard "The Synthroid has been lowered from 137 to 112. I sighed a bit and thought 'Let's hope that was a needed decrease'. But I think the ball probably falls in the other court. But let's hope.

Welcome & all the best to your friend.

[serenfach]

Its getting worse. The latest instructions to the medical fraternity is that just testing TSH is enough.

Interestingly there has been a 10% increase in the last 5 years in the USA of those taking NDT .

[Stills in reply to serenfach]

So there’s no point in even trying to get help from GP then and it seems unless one can fund private testing, scripts and the extensive supply of vitamins and supplements required for good health you’re scuppered.

This is the conclusion I’ve reached about being subclinical and also about my chronic AI rheumatoid condition as there’s just no help out there.

I’ve learnt here about gluten and dairy (thank you all) so will start omitting gluten, I’m veggie so hope not to have to cut out dairy too as that doesn’t leave much unless one can afford to buy gluten free.

The pandemic forced early retirement but it’s still 6 years until pension. I’m not looking for work now as too unwell and I have a bad leg acquired during covid so I’m living off savings and need to nurture these not squander them. Perhaps I should get a goat and make my own cheese 😀

[connyankee]

It's here in the USA, too. They won't look past TSH ad T4 because there is some thought that we will all have heart attacks if on T3. In the meantime, Thyroid patients were treated with Armour (T4+T3) since the 1800's. No one wants to get sued for a wrongful death. That's what they're thinking about. Paul Robinson's books and now website are useful, very useful. I feel like ordering a copy of his Thyroid Patient's Manual for every Doc in Endocrinology.

[Hidden]

That is so sad, Bigthensmallthenbig -and so common.

Brilliant for that woman that you have pointed her in the right direction -to this forum.

I recently met someone whose late wife was obese and was treated dreadfully by the medical profession -and she was a dr.

Who knows if it was connected to her thyroid but no one chooses to be obese and often, like your friend, they eat little and this strongly suggests a thyroid influence.

From different peoples' experiences on this forum, I think the "scandalous" treatment of thyroid disease is world-wide.

[Bigthensmallthenbig in reply to Hidden]

Well, I’m hoping she gets her T3 tested soon.

Fingers crossed it shows poor conversion and she can move straight to go with an educated endo through the group