Has weight loss improved your thyroid problems? - Thyroid UK

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Has weight loss improved your thyroid problems?

Chancery profile image
85 Replies

I've been reading a lot about the connection between hypothyroidism in weight gain and obesity. It's long been believed that hypothyroidism causes/contributes to obesity because of the metabolic effects of same, but there seems to be more research being done that questions that theory and now some researchers are expressing uncertainty as to whether hypothyroidism is causing weight gain or whether weight gain causes hypothyroidism (subclinical, idiopathic variety, I think. Obviously not autoimmune hypothyroidism!). The only thing that seems certain is that thyroid serum figures generally improve with weight loss, and, in children at any rate, it can actually 'cure' the condition, as in make them euthyroid (is that the right term?)

I was very curious to know if anyone had done a weight loss diet, or lost it for any other reason, and found their thyroid figures, or the condition/symptoms themselves improving.

Anyone had any experience, or have any thoughts/ interesting research on the obesity/thyroid connection?

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Chancery profile image
Chancery
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85 Replies
san_ray70 profile image
san_ray70

My Doctor told me if I am on the right dose of Levothyroxine I could lose weight. I joined S.W. and lost 2st, when I have a blood test I will know if it had any effect, but I feel better n myself so it is worth it.

Chancery profile image
Chancery in reply to san_ray70

I'd be very interested to hear what the impact is on your blood test results, San. Let me know if you could - it would be good hard evidence, although, of course, you're on meds, so not quite clear-cut!

greygoose profile image
greygoose

I can see one possible connection, here - although rather tenuous. If you are very over-weight, you will have low Human Growth Hormone. If you have low HGH, you will have poor conversion of T4 to T3. If you have low T3 your TSH will rise… But, it shouldn't have any effect on your FT4 levels, so I don't know if that would be the lines they're working along. And, that won't answer the question: why did you put on all the weight in the first place? I can't accept that it's simply a question of over-eating.

Chancery profile image
Chancery in reply to greygoose

The only studies I've seen where they actually do weight loss (as opposed to meds) are paediatric. In those, the obese children lost their hypothyroid 'status' simply by losing weight, so, effectively, it cured their hypothyroidism. In the adult studies I've seen it's more a case of them looking at serum results and observing that obese patients show disordered thyroid results (both ways, but much more hypothyroid). This has made them question whether hypothyroidism is actually causing the obesity, or it's the other way round. Certainly metabolic syndrome is an obesity issue, so as the thyroid governs metabolism it's not really so surprising when you think about it.

greygoose profile image
greygoose in reply to Chancery

I'm not going to think about it. Far too complex for my poor brain!

san_ray70 profile image
san_ray70 in reply to greygoose

I re married felt content happy, did not worry what i ate. Love chocolate, so yes it was over eating. It is easy, over the years I have been on many diets, this is now my way of life not a diet. I do not want to put that weight back on. At the minute I have a bad knee so can not play table tennis. To compensate I am doing aerobics in a pool.

greygoose profile image
greygoose in reply to san_ray70

That really doesn't prove anything, does it. Do you know if you have a thyroid problem? You could have a sluggish thyroid, and that's why you have a weight problem. Do you even know if your weight is fat or water?

Chancery profile image
Chancery in reply to san_ray70

Yes, San, weight gain is very easy to do, especially if you have a genetic heritage of obesity. Sadly genes do play a big part in it, and the obesogenic environment doesn't help. Do let us know what your bloods are though when you have them done. I'd be curious to see if weight loss helps you, or them, any.

liekki profile image
liekki

The effects of hashis and hypothyroid seem to be highly individual. I for one didn't gain any weight but apparently I was able to compensate for lack of hormones up until I got diagnosed.

I think it's obvious that one starts to build up some extra heft, if ones metabolism slows down while caloric intake stays the same. And on top of it you're propably less motivated to move and do stuff anyway.

Chancery profile image
Chancery in reply to liekki

I think Hashis would be different, Liekki, simply because that's the thyroid gland under attack, i.e. it's a physical problem. I think these were more studies on idiopathic thyroid problems, i.e. with no known cause. When you think about it, those are the ones more likely to be due to something like (other?) metabolic disruption, like obesity.

Marz profile image
Marz in reply to Chancery

Hashimotos is the most common thyroid issue globally ... 😎

Hillwoman profile image
Hillwoman

Hi Chancery. Do you have any references for the research you've been looking at?

Chancery profile image
Chancery in reply to Hillwoman

It was all on PubMed, which I got, I think (I did this very late at night, like this post!) by putting in "obesity, thyroid" and I think I maybe also searched for "obesity, hypothyroid" and maybe even "obesity, high TSH". I know I got to it via Google, which brought a paediatric PubMed study up. After that I checked on PubMed itself and there was quite a few of them - too many to read late at night, but definitely worthy of more study.

LivingWithHT profile image
LivingWithHT

I think if you have hypothyroidism, losing weight may slightly improve the TSH reading (as it did with me whenever I lost weight and stayed within a healthy weight range) but my T4 to T3 conversion was still poor, my FT4 levels were still not optimal and my FT3 levels were still on the lower end.

From personal experience, losing enough weight (in fat) did not stop me from being hypothyroid. Once your weight stabilizes and your overall bodily functions get used to it, the usual symptoms and issues will eventually come back...unless one is optimally medicated and vitamin levels are also optimal.

If a person develops mild hypothyroidism after gaining a considerable amount of weight and then goes back to having a better functioning thyroid once that excess weight is lost, it usually means the person has not yet reached the stage of full blown hypothyroidism but will likely develop it in the future.

I agree that overeating can only make you gain so much weight if you have an optimally functioning thyroid.

Chancery profile image
Chancery in reply to LivingWithHT

I think that's a very interesting notion, Living, because there's a lot of genetic research on gene expression nowadays, and it very much underlines that although you may have a genetic predisposition to something like heart conditions, or breast cancer, or obesity, there has to be something in your environment to trigger it - that being where lifestyle choices come in. So it makes me wonder whether even if you have a genetic link to hypothyroidism would it manifest itself if, say, you lived up a hillside in the Ukraine and never ate a Western diet? It's an interesting thought...

LivingWithHT profile image
LivingWithHT in reply to Chancery

Yes, good point. If it’s a weak genetic link with a very low chance of developing then that person may never develop hypothyroidism until maybe during their senior years, when the immunity system naturally starts weakening. A somewhat calm and secluded lifestyle like that also helps diminish stress which, in turn, diminishes the chances of becoming ill.

Chancery profile image
Chancery in reply to LivingWithHT

Yeah, too late now for me to secrete myself up a hillside at 63, but think I'll do my own diet & exercise experiment. Can't hurt....

Marz profile image
Marz

Do you have any links for the research you mentioned ? Having been around on this Forum since 2011 I have not ever read anything supporting your post - which of course does not mean it does not exist.

Patient blaming is a common thing in medicine today 😎

Perhaps they are trying to conceal the effects of 5G - toxins in food and the environnent - all of which can disrupt the delicate balance within the body. Sorry no links ...

LivingWithHT profile image
LivingWithHT in reply to Marz

I have read similar information to what the OP posted but they were mentioned on very popular medical sites that offer cliche superficial medical information/advice or studies carried out by doctors and it did seem like they were blaming the patients for gaining weight 😄. Some parts also mentioned the increase of leptin resistance with the increase of fat...which makes sense if the weight gain was primarily from fat.

In all honesty, a lot of people are still not properly enlightened (or willfully ignorant) on the underlying causes of weight gain, being overweight or the inability to maintain a healthy weight with ease so it’s much quicker and easier for the brain to directly assume “it’s because of eating so much and gaining a lot of fat” than to actually take the time and energy to conduct the necessary research.

Funnily enough, a lot of the weight gain is also water weight and, as I have recently discovered, excess mucin/mucus...or else people wouldn’t usually be losing all those excess water/fluids in the first month of low carb or calorie diets. I also recently discovered (from the help of members on this forum) that the excess mucin in the body that hypothyroidism sufferers can develop can actually trap the excess fluids in the body and make it difficult to flush them out with the usual means. This actually opened my eyes to the reason why my body tends to retain so much excess fluid and takes sooo long to flush it out, even when I drink a lot of water, exercise or eat clean. Ultimately, for thyroid disease sufferers, it’s really not as simple as counting calories.

Chancery profile image
Chancery in reply to Marz

It was all on PubMed. I'll have a look again tonight and see if I can find them again and I'll put links up.

Marz profile image
Marz in reply to Chancery

😥

Chancery profile image
Chancery in reply to Marz

hey, don't cry - I managed to find a few (put links down below), and a couple of new ones. Seems to be plenty on there. Each article brings up a little window to the right with related articles, so it's definitely a much-studied subject.

Marz profile image
Marz in reply to Chancery

Thank you ... will take a look in the morning when I am more alert ! I won't miss the side windows ?

Next time you are researching Pub Med check out Low T3 syndrome ... 🤔

Chancery profile image
Chancery in reply to Marz

That's an actual thing - on PubMed? I definitely will - thanks for the tip.

Marz profile image
Marz in reply to Chancery

Yes it is ! Search Chris Kresser and Low T3 Syndrome for some explanations. The brain has first call on T3 - then the gut/immune system- heart and other organs. So if your T3 is LOW then you will not have enough to service your body's needs.

Research has always had a big question mark. Have you read Dr Malcolm Kendrick's latest Blog about placebos not being a placebo. In an effort to try and prove statins are without side effects Big Pharma adulterated the placebos. - SIGH ! It won't be the only drug treated that way. They will stop at nothing where money is concerned.

There is information on the NHS website about dosing Levo/T4 according to weight. Which suggests you need more Thyroid hormone if obese and maybe losing weight could reduce your dose - who knows ?

Of course weight gain/loss is one of 100's of symptoms linked to thyroid. In the good old days BEFORE Thyroid testing in the 70's people were treated by symptoms and the dose increased until symptoms disappeared.

Are you concerned about your weight ?

Chancery profile image
Chancery in reply to Marz

Oh Marz, I'm ALWAYS concerned about my weight - that's the gift that just doesn't stop giving, but unfortunately I have a long history of dieting then regaining, which has slowly turned into an eating disorder over the years. You have NO idea how much I wish I hadn't gone on that first diet at 14, I reckon I'd be at least two or three stone lighter by now, and not nearly as obsessed.

P.S Yes, I was actually the first person to introduce Malcolm onto this forum, or at least to most of the people on it (honest!) way, way back. The placebo piece is really interesting. I had no idea they could give anything they liked as a placebo. Kind of makes a mockery of placebo based studies.

Marz profile image
Marz in reply to Chancery

I am sad for you that your weight is such a challenge. Another Thyroid symptom ?

How is the health of your family ?

Chancery profile image
Chancery in reply to Marz

I'd LOVE to believe that my weight is a thyroid problem, but I think it's a genetic and overeating problem! As I mentioned to someone down below, my grandmother and her sisters all, ALLEGEDLY (heavy emphasis, as this came from my mother and is not reliable) had thyroid problems. Certainly my grandmother was always fat, and everyone delighted in telling me how much I looked like her, so.... She got very corpulent in old age, when she developed dementia, again allegedly, from my mother, because she didn't know she had just eaten so she would just eat all day. As she was in a care home I'd have thought that was a relatively easy thing to stop by confiscating the snack products, but maybe they figure the people don't have long to live so let them eat/do what they want.

I have to say, from a child's flawed memory, my grandmother didn't eat a lot, but she was married to something of a feeder, who liked to bring her cakes and ice cream, so that was possibly enough to be metabolically disruptive, especially if the genetics are there. Certainly I have always entertained the idea that the sisters dodgy thyroids was true, but that was based on nothing but the fact that she was fat and couldn't seem to lose it (and also seemed tired and easily fatigued a lot). She was always doing bad diets (typical 60s stuff, like eating Nimble bread and taking saccharin in her tea).

When I first started seeing these subclinical results, round about 2014, I was on Carbamazepine, which both disrupts thyroid, potentially, and gives false thyroid results, so they couldn't be trusted, but I think that's why I've stayed on and off the thyroid trail, because of that supposed history of my grandmother's, and, of course, the fact that I can tick an AWFUL lot of hypothyroid boxes - but there's always that old chestnut of there being so many vague symptoms that occur on so many illness checklists it doesn't prove anything. So here I am, still returning to this forum every time a new thyroid aberration appears on my blood tests, and frustrating poor Marz….

P.S. LOT of obesity and heart disease on my father's side, but my mother always kept good health, in so far as you could tell with her - she belongs to the school of 'if I don't say I'm ill, I'm not ill'. She considers illness a weakness. Good job we don't talk or I'd be crushed by judgement.

Marz profile image
Marz in reply to Chancery

So I return to the book by Hugh Hamilton - Impaired Sensitivity to Thyroid Hormone - ISTH. He is a member here and his e-book is v cheap on Amazon. DippyDame found it helpful I believe ..

ISTH runs in families .. 🤔

PS I read the book on my phone !

PPS I carry extra weight too but am lucky to be 5'11" with slim legs - that don't work too well !!

Chancery profile image
Chancery in reply to Marz

5ft 11"??? You supermodel goddess, you - I had no idea. Thanks for reminding me about the book again. I just looked it up and I'm going to do some research on this ISTH condition, which I'd never heard of until - I think Dippy Dame mentioned it? Or at least I'd not taken it in. I'm not on here often - like I say, I only roll up if something anachronistic pops up - but I don't ever remember seeing it before, it's usually all Levo problems and T3 problems. If it looks interesting/ relevant to me I shall treat myself to the book. Thanks again for keeping on my case with it. See? Your dogged reminders do pay off!

Marz profile image
Marz in reply to Chancery

I gave you the details of Hugh's book two months ago on the PAS Forum !! The e-book is very inexpensive - under a fiver !

Chancery profile image
Chancery in reply to Marz

Oh, I know - that's what I mean about your dogged reminders. I remembered the book (although not about the condition) but I never got around to looking it up (done it now though!). Already done some researching on PubMed but it looks very rare, and very complicated, with all the different (genome?) varieties. I can imagine trying to convince a doc you had that. Plus it does seem to lead to stunted growth and the likes, which I definitely don't have. While I'm not in your leggy league, I'm 5ft 6", just standard, so I suspect it's more serious than any symptoms I'm showing.

Strangely, I haven't been able to track down a symptom list specifically for that (it obviously isn't a generalised condition). Those are helpful for seeing if anything unusual stands out. Poor old thyroid is such a generic disease symptom-wise. I think that's why docs put so much (idiotic?) faith in the blood tests, because the symptoms are so difficult to be certain about. Given that, you'd think they'd do more comprehensive testing, but I suppose that would be too obvious, and intelligent. I'm going to do the T3 condition you mentioned next, as soon as I can get the stamina for ploughing through more obscure and difficult research studies...

Marz profile image
Marz in reply to Chancery

It is not as rare as it's made out. Read the book. The NHS does not prescribe T3 due to cost so how would they know that so many could improve by saturating their cells with T3. Sorry it's not rocket science !

Chancery profile image
Chancery in reply to Marz

You could write a book entitled "The NHS does not..." and fill about 400 pages - easily.

Cooper27 profile image
Cooper27

I think there is a relationship, but I think they're looking at the wrong culprit. Cutting calories/crash dieting are proven to affect your T3 levels. I would presume this affects T4 and TSH if you do it egularly or for long periods.

I guess most overweight people have probably limited calories in the pursuit of weight loss at some point, perhaps for long periods, perhaps more than once, which I think could cause hypothyroidism in some.

Of course scientists would never conduct a study that demonised losing weight, so instead they have to assess the being overweight in the first place. I think that's risky because it pushes more people to pursue extreme weight loss, potentially triggering more to develop thyroid issues (if I'm right about this).

BadHare profile image
BadHare

It’s a chicken or egg situation.

If people eat a poor diet, low in quality macronutrients & micronutrients, they won’t have the necessary bio chemicals, pro hormones, etc, to produce thyroid hormones naturally do their bodies could suffer in many ways. They’re also likely to have poor gut health which impacts so many bodily functions & is thought to causes cravings for more bad food. The junk peddled as healthy such as toxic chemical sweeteners & plastic margarine makes me scream.

Prior to taking thyroid meds, I ate a very soy high, calorie restrictive diet, including some processed vegan products. I gained a lot of weight, about a clothes size/stone, being ignorant of thyroid issues & the effect of goitrogenic foods. I’m certainly not thin, but do eat like a horse now my hormones & micronutrients are better.

Chancery profile image
Chancery in reply to BadHare

Yes, DEFINITELY is a chicken or egg situation, BadHare. I don't envy researchers trying to sort it out, or prove anything, but it was interesting.

jamesal0 profile image
jamesal0

For me diet and exercise is a factor. But fundamentally I put weight on when on Levo and drop weight on NDT. And I'm not abusing the NDT dose. 60mg NDT or 50mcg Levo

Chancery profile image
Chancery in reply to jamesal0

Sorry, I'm not up on my meds, James. What is NDT, and why do you think it makes a difference compared to Levo - if you have a theory?

Marz profile image
Marz in reply to Chancery

NDT = Natural Dessicated Thyroid - containing T4 and T3. So metabolism is better with T3 in the mix and people lose weight - not all. It's pig thyroid and used for a 100 years until .... along came Big Pharma !

Chancery profile image
Chancery in reply to Marz

Ah, thanks, Marz - I remember it now, from way back. Kind of seems logical that might work better, since it's 'complete'.

Marz profile image
Marz in reply to Chancery

Rarely prescribed in the UK anymore. Not quite natural as it contains fillers etc !!

Chancery profile image
Chancery

Here's a few of the links I've been able to re-find:

ncbi.nlm.nih.gov/pubmed/273...

ncbi.nlm.nih.gov/pubmed/311...

ncbi.nlm.nih.gov/pubmed/287... (Not sure how relevant this one is, but still interesting)

ncbi.nlm.nih.gov/pubmed/314... (Sorry, this is a rat study, so has limitations, but they do kind of provide evidence it's difficult (or illegal!) to get from humans.)

ncbi.nlm.nih.gov/pubmed/308... This is one of the very interesting paediatric studies, which actually involves results after weight loss. This MAY be the big study I read, but I can't find the full version as yet. Going to try Google, since I started there last time, but this gives a succinct view of the, I think, same study, or at least another study showing the same results.

If I manage to track down the big study again I'll post a link on here. Should have kept a note of the damn thing, but like I say, did it late last night and was so intrigued by the idea I just dashed over here last thing before bed to ask the experts about it.

I'm not sure how much this applies to people with Hashi's but at least one of these studies suggests that Hashi's could be triggered by obesity. It could certainly be a genetic expression trigger. I find it interesting though that these thyroid issues have not been roped into metabolic syndrome studies. Don't know whether that's a sexist thing - it's a 'woman's problem' so who cares? - or there just isn't enough causality here to justify including it. Mind you, that doesn't generally stop researchers.....

Chancery profile image
Chancery

Some more of the kids' studies. I haven't been able to find corresponding weight loss adult studies yet. Whether this means no-one's done on them on adults, or they don't get as good, or clear, results on adults, I don't know. If I find any I'll put them on.

ncbi.nlm.nih.gov/pubmed/216...

ncbi.nlm.nih.gov/pubmed/276... (not sure this one proves anything!)

And here is one discussing the situation in adults, and it's really interesting, but unfortunately there is very little of it there, so it's like a thriller with no ending! Still, gets you thinking...

ncbi.nlm.nih.gov/pubmed/188...

helvella profile image
helvellaAdministratorThyroid UK in reply to Chancery

A line from that last lnk:

The association between TSH and BMI has become a complex topic in the light of the endocrine activity of adipocytes.

Sadly, that appears to be part of the issue. The initial appearance, even assumption, that something isn't complex. I'm afraid that this topic hasn't become complex, it always was complex: biology is incredibly complex. All too often, the most obvious "facts" get turned completely upside down by further investigation. Possibly several times.

(This is not in any way to dismiss this thread and all the links. It covers some interesting issues.)

Chancery profile image
Chancery in reply to helvella

I thought the adipocyte thing was very interesting. I've read a lot on insulin resistance and metabolic syndrome over the years, but I don't remember ever reading about them. I intend to do a bit more research on those. And yes, I think metabolism in particular is incredibly complex. That's why there's no easy solution to the 'obesity epidemic'. To reduce it to calories in/ calories out, as if humans were wood burning stoves, is ridiculous beyond measure, but it still persists.

MichelleHarris profile image
MichelleHarris

I absolutely know that I did not overeat and yet struggled with my weight for a few years and then in the last year put on 20kgs, 10 kgs of which in the last 3 months before I got Shingles for the second time. I am absolutely sure that my problem was of medics dismissing me and not my own fault of overeating !

Chancery profile image
Chancery in reply to MichelleHarris

I imagine you're exactly right, Michelle. It's like Addison's disease (right one? I mix that and Cushing's up) - anyway, the one that gives you a literal hump and makes you fat! The amount of poor women who get that and who struggle to be believed, or diagnosed, when they pile weight on. There's no doubt some people, especially those with autoimmune conditions, pile weight on as part of thyroid conditions.

DippyDame profile image
DippyDame

As far as I can see there is obese (poor diet) and there is thyroid obese,!

In my 20s/early30s I was a small size 12(UK) this was before my weight started to slowly increase - my studies included food science so I ate a very healthy died.

By my late 40s it was clear I had a serious problem. GP's advice...eat less and excercise more. ...I tried, knowing full well it would make no difference....and it didn't.

I tried various other options...both private and NHS. No change.

By my late 50s I was becoming bloated and exhausted. I could no longer work.

In my 60s I requested a thyroid problem (it had never crossed my GP's mind) and hypothyroidism was diagnosed and "this little white pill which will make you better" (levothyroxine) was prescribed. I continued to feel unwell, bloated and overweight (by then a size 18 and rising!

By the age of 70 I could barely function and knew I had to take control...by amazing luck I found this forum and the experience, knowledge and support of it's members. My thyroid hormone function turned out to be the problem and to cut a long story short I have Thyroid Hormone Resistance (complicated issue) which means that over time my cellular T3 was reducing and consequently my metabolism was impaired.....and I was struggling big time.

Now, aged almost 75 and almost optimally medicated on T3-only, my weight has now dropped (no change in my diet) by over two stones, my heart rate and blood pressure are now normal, my cholesterol is now normal and so on. My limbs are no longer "blobby"! And I'm beginning to feel alive again....all just in time for my husband and I to self isolate due to covid-19, encouraged by the concerned science academics in our family!

My reason for this rant and my response to your question, "Has weight loss improved your thyroid problems?", is that correct medication for a thyroid problem (usually hypothyroidism) is the answer to some people's weight problem.

Others just need to follow the advice....more exercise and healthy eating!

Crucially, medics need to understand thyroid disease so that patients are correctly diagnosed and optimally treated....sadly they do not! And equally they need to understand the significance to the body of T3, and the importance of nutrition!

I very much doubt that weight loss per se improves thyroid problems....that strikes me as putting the cart before the horse!

Having an open mind I'll be happy to be proved wrong!

Best...

DD

Marz profile image
Marz in reply to DippyDame

If you click onto Chancery's username you will see she is a member on many Fora seeking answers. Many of which have connections with Low Thyroid. I have been attempting to make helpful suggestions over the years to no avail :-) Even heart failure is mentioned by Chancery on Gluten Free Guerillas - and as we know Low T3 and hearts are linked.

Hope you are doing well on House Arrest !

DippyDame profile image
DippyDame in reply to Marz

Hello...well I can wholeheartedly vouch for the help I've been offered by both you and a number of other amazing people here. But...you can take a horse to water etc!

Hope C can find a way forward.

Thank you, we're fine. My husband still spends time in the our "isolated" garden (despite being in the middle of an old market town) and I'm happy pottering about.... tech contact with family et al is good though we will now miss having them all with us at Easter. Grandchildren not too impressed!

Might feel different about captivity in a few weeks!!!

Challenging times for so many.

Take care and be safe

DD

Marz profile image
Marz in reply to DippyDame

Thank you - we are doing our best here in North Devon. Confirmed cases in local hospital. We are still out and about but taking care and aware of the onslaught that looms. At least we do not have to think of work and children which must be so stressful for so many ... be safe - be well 🌻

Chancery profile image
Chancery in reply to DippyDame

You can tell I frustrate the hell out of Marz, Dippy! She's right about my awful history of answer-seeking, but wrong about me not listening to her. I think she's a gem. If I ever get a diagnosis for my problems, and it turns out to have been thyroid all along, I intend to send her a framed picture of it with 'YOU WERE RIGHT' written across it.

DippyDame profile image
DippyDame in reply to Chancery

I'm sure Marz is right!

An under medicated thyroid can play havoc with the whole body, - that's why over 100,000 people have arrived here looking for help because medics have failed to correctly diagnose and medicate them.

The experts are here, not in a GP's surgery!

The problems you have are most likely caused by an under diagnosed thyroid problem, fix that and much else will improve. Go girl!!

I'm now sure both my mother and her mother, my Granny, had low-T3...it is often genetic in nature.

So yes, listen to Marz I'm sure she would love to hear you have taken steps to improve your health and let my story encourage you.... although it is one shared by many here

Good luck

DD

Chancery profile image
Chancery in reply to DippyDame

Thanks, Dippy. And you're right, the sheer volume of people on this forum kind of indicates that it's a problem that's not being treated adequately, or perhaps that it is part of metabolic syndrome after all! Just going to check out ISTH (thyroid hormone resistance) on PubMed. Thanks for bringing it to my attention; I'd never heard of it before.

Hillwoman profile image
Hillwoman in reply to Chancery

Also look up work by the late Dr John Lowe, which is mainly to be found in a rare book, The Metabolic Treatment of Fibromyalgia, published c. 1999/2000 (try inter-library loan). He and his team of colleagues investigated aspects of TH resistance that others in the field have never bothered to consider. You may find some papers online from the journal Thyroid Science (became defunct after his death).

He was ignored by the medical mainstream - so you won't find much on PubMed - because he was not an endocrinologist, but a chiropractor. However, a US chiropractor goes through full medical training and emerges as a qualified doctor. (There is naturally more emphasis on anatomy in a chiro's training.)

thyroidmanager.org is the place to go for info about genetic RSTH syndromes. These are thankfully rare, because present from infancy and devastating to child development.

I think exercise is the only point on which I would disagree with dear Dippy's comments above. Weight gain is hormonally controlled. Even when you're convinced it must be about diet and exercise, the underlying explanation is always hormones. Read Gary Taubes and Nina Teicholz, if you haven't already (I'm sure you have ;-) )

Chancery profile image
Chancery in reply to Hillwoman

Thanks, Hillwoman. That's really interesting, I shall look Lowe's work up (yes, have read the others). I was walking down to the supermarket today (I have some 'cold' symptoms so I'm trying to do my civic duty and go on buses as little as possible) and I was really sore and achy, partly due to not enough sleep, which always seems to make my muscular pain much worse - haven't been able to figure that one out. My mind was wandering, as you do, and I was thinking that when I finally see the rheumatologist he'll probably just diagnose me with fibromyalgia. I was writing a whole scenario for what I thought of that sexist BS, etc, etc. I'm very heroic in my fantasies.

But the idea that fibromyalgia might be metabolically linked is a fascinating one. You see a lot of alternative medicine/health sites advocating thyroid 'protocols' for hashi's, and other autoimmune issues. These nearly always turn out to be diet restrictions, commonly vegan, but certainly removing so many major foods (dairy, gluten, sugar) that people can't help but lose weight. In other words, the 'protocols' are weight loss diets - that certainly links these 'cures' to metabolism issues.

Hillwoman profile image
Hillwoman in reply to Chancery

Food restrictions can lead to weight loss, but yes, usually because of their impact on insulin secretion and hormone-sensitive lipase, plus leptin (and no doubt others) through carbohydrate restriction. If you cut out sugar and gluten, not only do you begin to control insulin, but you also lose retained water - sometimes a great deal of it.

Dairy is an interesting one. Going on a dairy-heavy paleo or keto diet results in weight loss for many people. Others gain weight because of the way their body handles the IGF(insulin-like growth factor) present in milk and cream. Sorry, that's a bit vague - need to get my books out. They may also be the people for whom dairy is a cancer risk.

Have you come across the Hyperlipid blog? It is often very abstruse, because the bloke who writes it trained initially as a biochemist (before becoming a vet 😏). A lot of the people commenting come from similar backgrounds. He eats a lot of dairy, following the tenets of a Polish scientist who became something of a weight loss guru over there. Some years ago, there was a reference on a blog post to the particular difficulties experienced by hypothyroid people when trying to lose weight, so you may want to search for that.

high-fat-nutrition.blogspot...

Chancery profile image
Chancery in reply to Hillwoman

Thanks, H - abstruse doesn't quite cover that blog. That is dense! Quite accidentally I did a low dairy diet for a year and a half, when I had gallstones and couldn't eat fat at all (I mean at all - even chicken and white fish could be problematic). I found (virtually) dairy-free quite good. It improved reflux symptoms (although that could have been the absence of fat) and overall felt 'lighter' - not scientific, I know, but the best description I can do. And, of course, I lost tons of weight (over 5 stones, I think it was). However, I believe it's what led to me developing B12 problems, then trigeminal neuralgia from that (that's why veganism can be an issue). Because of this, and because a lot of dairy seems to annoy my gut, I can't quite visualise a high-dairy diet. But then, they will be eating that without carbs so that might make all the difference. Plus, of course, I've been having histamine issues, and cheese (and yogurt, somewhat less so) are high in histamines, so I guess I'm not an ideal candidate.

I believe that low fat diets, and MAYBE low dairy, have also been used to treat both epilepsy and MS - or maybe just MS, I'm thinking now, on reflection. Epilepsy in children was the opposite! It's ketogenic diets they've used there. But dietary fat can definitely be a metabolic issue. What I suspect though is it becomes an issue AFTER you've screwed up your metabolism via over-consumption of carbohydrates. Maybe....

Giving this more thought, writing it, I'd say out of the 4 or 5 very long and sustained diets I've done in my life (a year to a year and a half each time - that cannot be good for you) I'd say the low fat one was the most effective in weight loss terms, but I believe it did terrible damage too. But then I believe dieting does terrible damage, no matter what way you look at it. It certainly has to me.

E.T.A Should just say, none of my long-term diets was ever low carb (did lots of short low-carb though). The closest I came was doing a sugar-free diet (including fruit) for six months. That was both hard (terrible fruit cravings) and effective. Possibly, if that had been done for a year it would have been the most effective. And thinking about that further, I didn't need to do it for a year - I lost quite a lot of weight just in the six months (down from a 16/18 to a 14), so I'm wondering if sustaining that would have got me down to the 10/12 I was on the low fat diet faster, and perhaps not produced the health problems (I believe the no-fat diet caused poor nutrient uptake, especially to my brain, hence the B12/TN problems).

Hillwoman profile image
Hillwoman in reply to Chancery

I remember something Gary Taubes wrote in one of his books, to the effect that some people's metabolisms are so far broken by the standard diet of our times, that they may never lose much weight on a low carb diet. As long as you're not over-secreting insulin, with all the consequences for future health, you may at least improve your health and resistance to infection.

Oh, and Taubes is the only medic or health science writer I've ever come across who addresses the plight of the post-menopausal woman. Apparently, exercise is BAD!! Fine with me, I can't exercise much now anyway. However, he doesn't address the plight of the post-menopausal, hypothyroid woman. No-one does, except Paul Robinson, in a few remarks he made on Faceache recently. I hope he goes into more detail in one of his future blog posts.

Chancery profile image
Chancery in reply to Hillwoman

Really? Exercise is bad? That's a not something you read from scientists very often. Don't suppose you have a link for anywhere he discusses that? Or was it in one of his books? I am chronically aware of just how unfit I have become and live in a constant fugue state over whether my pain problems stem from lack of exercise, or I don't exercise because I have a problem causing pain! What I do know is that it's a real 'serpent with tail in its mouth' situation; a vicious cycle supreme. For example, with Covid-19 I've been walking to avoid buses because I'm showing symptoms of a cold, and after three days of it I'm sleeping really badly because my hips are hurting and I can't get comfy in bed. And it's joint pain, not muscular - so where do I go with that? What's the right thing to do? Less walking and more resting, or the opposite?

I don't know Faceache or Paul Robinson - what's he about? And worth checking out?

Hillwoman profile image
Hillwoman in reply to Chancery

Er, yes. Exercise will not help you lose weight, though it will keep you fit in other ways. This is something so widely acknowledged now, even if mainstream health advice has been banging a different drum for decades, that I'm a bit stumped for specific references. As you've read Taubes, you'll know why this is, surely? I can't put my hands on my copy of 'Why We Get Fat, and What to Do About It' - which is what happens when my husband moves my books without permission and shelves them anywhere - but it's all in there, including the stuff about exercise post menopause.

Hypothyroidism will give you awful joint pain. I was agonies for about 30 years from the age of 14/15 with what I thought was arthritis. It turned out to be myxoedematous deposits around the joints. These deposits will lead to wear and tear of the joints though.

Lack of sleep is known to cause muscle and joint pain (I'm suffering lately through the many nocturnal demands of an obstreperous and ailing cat). No idea of the mechanism in this case, I'm afraid.

Faceache = Facebook. I sometimes call it @rs*b00k, just for variety.

Paul Robinson: author of several books on hypo that take a close look at the recent science and apply it using actual logic to the currently unmet needs of thyroid patients. He has a discussion group on FB and an interesting blog on his website: recoveringwitht3.com Definitely worth checking out (especially by those of us who need T3 in largish amounts).

Chancery profile image
Chancery in reply to Hillwoman

Hah! You said exercise is bad, not that it's bad for losing weight! I thought you meant it was bad FOR you. Yes, I know all the research that tells you how crap exercise is for losing weight. I could have told them that without research. Up until I was about 45-ish I was big on walking. I not only walked everywhere, I'd go on epic adventures of walking everywhere I lived (I think the most I ever did in a day was 22 miles - in stupid shoes; fortunately we were able to come back barefoot along sand - great reviver of feet). But I never experienced weight loss from it. Always had to watch my weight no matter what. The only time I came close to seeing weight loss with exercise was when I worked as a postie briefly, and I had to lug this huge bag about, on foot, up Orkney hillsides for four hours a day. I don't know whether that toned my muscles and thus burnt more calories, or whether it was the early rising, or whether it was me being too bloody tired to eat, but I did lose some weight on that. As you can see though, a lot of hard graft for moderate weight loss.

By the time I was about 48 though, and in the dreaded perimenopause, I was gaining weight so fast, and dealing with terrible flushing, and thrush, and bloating, and lumps in my breast, and pain in my breasts, and sleeping problems, and general misery (my longstanding partner decided to have his own mid-life crisis and have an affair) that I started getting achey and apathetic, and it's been downhill ever since.

I think I can fairly say menopause was the death of (the old) me.

I thought Faceache was Robinson's blog title! Never heard it called that before; I thought maybe face-ache was something fibromyalgia patients were suffering from or something! Thanks for the link - I'll go suss him out.

Hillwoman profile image
Hillwoman in reply to Chancery

Sorry to confuse. I was writing in the context of weight loss. ;-)

Menopause is vile, and goes on being vile, despite the obvious non-cyclical benefits. My hair is thin (esp. on top), I've turned into a waistless pot-bellied lump, and fluid has re-accumulated everywhere - and all these problems I had when I was on levo, but reversed on T3 monotherapy. Menopause has re-reversed all the progress I made. It's evolution's sick joke on women.

I used to walk everywhere. I had to walk miles a day when I was a kid, and I enjoyed hiking anyway (lived on the Peak District border). When I went down south to uni, I continued my walking everywhere in unsuitable urban terrain. Also in London with my first few jobs. Did you know Londoners have no feet? That's what I concluded from the reaction of my colleagues to my insistence on getting out of the wretched tube and walking "all the way?" from Oxford Street to Pimlico.

Chancery profile image
Chancery in reply to Hillwoman

Ha - I remember that reaction well! When I lived in Cumbria, about three miles from the town of Maryport, we used to walk in most days and get our shopping, so we walked about 6 miles a day, then often some more for recreation. Everywhere we went people would say to us - "We pass you in the car a lot. You must be really fit from all that walking." Or "No wonder you're so slim, with all that walking you do." It never seemed that much to me - I enjoyed it, although during Cumbria's windy season it could be VERY hard and then it got a bit of a chore. But our neighbours went everywhere by car. There was a footpath all the way in to town and we never - no exaggeration - saw anyone else on it in all the years we lived there and walked it. Not even dog-walkers.

And oh what a disappointment menopause turned out to be - BIG time. I suffered with heavy, long, painful, short cycle periods (or long cycle, depending on your point of view!) my whole life. They were, quite literally, a major pain (and expensive!) and I used to long wistfully for the day when they'd be over. I had seriously big plans for all these things I'd be able to do. I had ZERO idea of the adverse effects of it, and things you just don't see coming, like constant thrush for the entirety of perimenopause. I won't get graphic about it, but I bled constantly for about two years or more and (female) doctors I saw at the time were useless. I was refused HRT (by a girl in her late twenties, notably!) and told they 'didn't prescribe it anymore' due to breast cancer, so I used useless drugs that were supposed to slow bleeding (they didn't) and bought incredibly expensive (prostaglandin?) cream from the US at £70 a pot (I am at least happy to say I've never spent money on an alternative cure like that again - so I did at least learn soemhting). That was less than useless.

A few years later, when I was finally in menopause I discovered it was BS, and HRT was still being cheerfully prescribed by doctors, and had been all along. I really wish I'd got a second opinion then, but I was just so worn out at the time and took her at face value. Life begins at 50? Mine didn't. Mine ground to a painful worn-out halt.

I don't know how true it is now, but NOBODY talked about menopause in a realistic way when I was young. My mother never mentioned it, and if she had she'd have denied any problems with it. In fact, years later, I mentioned to her that she'd had to go to hospital with headache problems (when she must have been in pre-menopause) and she had NO memory of it - that's how good she was at denying health issues. I also remember a very painful 'discussion' with my father who asked me to talk to my mother because she was bleeding all the time and he was 'worried' about it. I can't even remember that discussion, which shows you how well that went! So there was no sharing, no warnings. Even now they tend to either minimise the effects and tell us all how we 'needn't suffer', and how young we can all still be, and them dark days our mothers suffered are gone, or they make jokes about it. That's women's two options for -ha ha - information.

Bitter? Moi?

Hillwoman profile image
Hillwoman in reply to Chancery

No-one talked about menopause when I was young either. You'd think it didn't exist, beyond the evidence of hot flushes and chin whiskers.

I'm beginning to re-think my no-HRT position, because my last set of hormone results, years ago, showed them all at floor level. Thing is, they're not supposed to be at floor level, even post-meno. Didn't realise this until a recent chat with Paul Robinson (heretofore mentioned), who's been researching the subject.

Apparently, the French do HRT better than we do (of course), providing progesterone in the safest form: body-identical, oral, and micronised in capsules. This is taken at night and, note, promotes sleep! Oestrogen taken alongside this form of progesterone it is most safely supplied via patches. The French research shows no increased risk of cancer within the first five years, and a tiny increase in risk over the subsequent five. Some of the references can be found in PR's most recent book, The Thyroid Patient's Manual, and the rest perhaps on PubMed or Paul's blog. Worth thinking about? How one accesses such treatment on the NHS is another question.

Another thought about sleeplessness and weight gain: raised cortisol is a consequence of insomnia and leads via various routes to excess fat deposition. But you probably already know that.

Sleep loss is difficult to live with. Besides my aged cat, I have obstructive apnoea, untreated - because hysteria, obviously. So I can sympathise with the effect on all functions, plus morale.

Are you still getting B12 shots for the TN? I do hope so.

Chancery profile image
Chancery in reply to Hillwoman

Progesterone! Thank you. I obviously had brain fog yesterday when I came up prostaglandins! It was a progesterone-only cream that was, allegedly, absorbed through your skin and would sort all your nasty menopause problems right out. I'm glad I at least helped pay for some American snake oil salesman's yacht.

I have never had my hormones tested. To be honest, it never even occurred to me you could. But I imagine I don't have any, except for the ones that encourage beard growth (if I let mine grow I'd have a venerable goatee - very distinguished.) I'm probably a scientific wonder, a woman still functioning with no hormones of any sort whatsoever. I don't think I'd take on HRT now though. I mean why? When I needed it, it wasn't there for me, when it might actually have helped the life-changing symptoms I had. I wasn't working at that time, but if I had been I'd have been in big trouble.

Yeah, cortisol's a nasty one. I've actually given up reading anything about it because it so obviously gets disrupted with stress and anxiety, and I have such problems with those, that I feel as if I am responsible for my doubtless trashed adrenals, and therefore my relentless and immoveable weight gain. It just makes me even more depressed. A lot of these things are a bit like 'Don't think about a pink elephant'. There's nothing you can do to stop it, or reverse it, and definitely no recourse in the NHS, who don't believe you can 'exhaust' your adrenals. Have you ever noticed just how MANY things the NHS doesn't believe in? It's like a comprehensive catalogue of female ailments. No gender bias in medicine there then.

And I can sympathise with the sleep apnea. Never a problem of mine (although my skinny ex had it from as early as his twenties - 40 years of ever-increasing snoring was fun with insomnia) until about a year or so ago, when I suddenly started getting it if I slept on my back. Fortunately I'm predominantly a side sleeper, but occasionally I'll drift off while on my back and always wake up coughing and spluttering and choking. Very occasionally I'm making so much (weird!) noise I wake myself up. Ah, aging …. it's SO much fun.

Hillwoman profile image
Hillwoman in reply to Chancery

It would seem from the references I've looked at so far that progesterone is safest taken orally, in the capsule form mentioned. Oestrogen is the opposite.

The point of addressing hormones post menopause is to reverse, if possible, some of the permanent problems it leaves you struggling with, including weight gain. Although you'd still have to address thyroid function. 😛

It all has to be considered in the round. For that, I can really recommend Paul's most recent - the Thyroid Patient's Manual.

Chancery profile image
Chancery in reply to Hillwoman

I'll definitely go check him out, thanks. Best of luck with your ailments. May you live to at least 100 and kick them all in the nuts. x

Hillwoman profile image
Hillwoman in reply to Chancery

Thanks, same to you.

Meant to add to above suggestions re gender discrimination in medicine: a couple of chaprters in Invisible Women (Caroline Criado Perez) and all of Doing Harm (Maya Dusenbery). Both v v well researched and argued.

Chancery profile image
Chancery in reply to Hillwoman

just read Invisible Women at the end of last year. I thought it was fascinating, if enraging. Hadn't heard of that other one, so thanks for that - just going to see if my library has it now. X

Chancery profile image
Chancery in reply to DippyDame

That's a remarkable story, Dippy, and it's absolutely amazing that T3 treatment made you lose weight, especially in your 70s. What a shame it took so long to get there. For me, however, I've only ever had subclinical hypothyroid results, which don't fuss doctors, and they always seems to occur along with other things, which, to me, seems suggestive that they are the result of some other malfunction rather than the cause. I feel that now, at 63, if I really had thyroid problems they'd have manifested in a much more forceful way, like your own, although my latest result of 10.7 is far more worrying than it's been previously.

That said, allegedly my mother's mother and all her sisters had thyroid problems, although I never remember seeing her take medication for it, and she stayed stubbornly fat despite (rather ham-fisted) dieting. When she was very old I saw pictures of her, living in a nursing home, (I lost contact with her) and she was enormously fat, really corpulent. Apparently because she had dementia she forgot that she'd just eaten and so would just eat all day. I always found that strange though - how many biscuits can an old sick woman keep in her room to get to be the size of a whale? Why not just limit her biscuits? But it's a fear of mine that I'll end up just like her, both for the fat AND the Alzheimer's - I'd prefer an ending like yours. (That didn't sound too good, I meant an ending to your health story - not death!)

Lilian15 profile image
Lilian15

I went to Lighterlife. There was another woman there who also had hypothyroidism. Losing weight did affect her and she had to reduce her thyroxine quite a bit. I was on NDT and my weight loss did not affect me at all and I remained on the same dosage all through.

Chancery profile image
Chancery in reply to Lilian15

That's very interesting, Lilian, thanks. I feel that some of the studies reflect that. Like I said somewhere above, I think people with Hashi's probably have less chance of being in the 'obesity leads to thyroid dysfunction' camp. That said, one of the studies did show that, at least in kids (I think), obesity seemed to be causing Hashi's or autoimmune reactions in some of them. Possibly, by the time people are adult, that effect is not reversible, or not fully reversible, and, of course, it does not explain those people who are slim, and always have been, but who develop Hashi's.

kyoto49 profile image
kyoto49

I was skinny when diagnosed a hypo. 9 stone, 5ft 6, sporty and very active. All that is a dim distant memory. I haven't put on loads of weight, but I have put a few pounds on my tummy. So my weight didn't cause me to become hypo but it has affected how hard it is not to add the poundage!

Chancery profile image
Chancery in reply to kyoto49

I take it you developed Hashi's, Kyoto? There does seem to be some difference between that and idiopathic and subclinical hypothyroidism vis a vis obesity. How was your Hypo spotted, if you don't mind me asking? I'm wondering because if you were active I'm assuming it wasn't the normal complaints of fatigue and weight gain and so forth?

kyoto49 profile image
kyoto49 in reply to Chancery

I've never managed to get any sense as to my actual diagnosis from the Dr sadly. Yep Hashis I think. I think my hypo crept up on me but my main symptom besides tiredness was vertigo. I had some bad bouts over Christmas and new year a few years ago and was lucky to get a young trainee Dr who tested for thyroid disorders. I think had I had a jaded regular GP I might still be on Vertigo treatment with no diagnosis of thyroid issues. I never put on any weight prior to diagnosis and not that much since, certainly most people wouldn't notice my little tummy and that comes for most people of my age regardless of their thyroid function!

Chancery profile image
Chancery in reply to kyoto49

So you don't actually know if it's Hashi's or not? Can I say that's a disgrace? You're walking around with a potentially life-changing illness and you don't really know what or why it is. What are doctors like? You can bet if the doc had it, he/she would know EVERYTHING about it, and be tested up the wazoo and back. Still, at least it hasn't screwed up your life even worse with weight gain. I suppose it's a 'grateful for small mercies' situation!

kyoto49 profile image
kyoto49 in reply to Chancery

The Dr's are clueless. I think I am as my antibodies were raised but when I asked he said people with Hashis had a goitre?! All I know is that I've got well by reading not via the Dr and this site has helped. Hopefully I won't put too much weight on in future. I do notice I'm hungry alot more though which makes me eat so maybe it's hunger that causes us to overeat? Rather than poor metabolic rate or something else?

Chancery profile image
Chancery in reply to kyoto49

Oh, you are definitely onto something there. I have a pet theory that (one of) my problems with weight was started as a kid when they gave me antibiotics every winter for sore throats. This was in the days when they didn't appreciate just how dangerous it is to give out antibiotics willy-nilly and I would get very bad 'tonsillitis' every winter. I now know that I have low IgA, which was discovered during testing for coeliac disease, and that's probably what made me so vulnerable to throat infections as a kid. I used to get these bottles of cloyingly sweet pink liquid which I ladled down my throat every morning before school. When you consider I probably had more than one bottle per season and I was doing this every year from God knows when till about 8 or 9 years old, that's a horrific amount of antibiotic. (And all probably pretty useless).

I reckon that it probably altered my gut flora drastically and has made me prone to weight gain, gut issues and possibly mood issues, all of which I have.

Coincidentally, I had a UTI over the winter, when I was very run down after three colds and an eye infection, one after the other, and nowadays they don't heal by themselves, so I requested antibiotics, on the principle that it's better to have one course straight away than three or four later (I've had to do that in the recent past so I swore I'd move fast this time to cut that down). It was just a teeny 3 day course of a standard antibiotic and it cleared it up - hoorah. However, I got the most disordered gut. All my IBS symptoms got worse overnight and I got terrible reflux and had to double up my reflux medication. I also got REALLY hungry and started craving sweets like nobody's business. It was so noticeable and very quick and I'm still struggling with it now, weeks later. I also got a really bad allergic reaction (rash right up my legs) and I'm guessing that these allergic reactions to antibiotics I've been having (this is not the first) are also due to too many as a child. I'm dreading being in my 80s and catching something serious because I don't know how the hell they'll treat it.

So yes, definitely, things can throw your eating off, and your gut off, in a big way - particularly drugs or anything metabolically altering.

bookish profile image
bookish

Hi, I seem to have a problem with the fibro site so couldn't reply. Not sure why, or if my posts will all be vanishing. Best wishes.

Thanks for that. I think the problem with anti-histamines is that they only act on receptors and don't actually reduce the level of histamine, and also can make it worse long term. Here is Micki Rose's Histamine page (1) in case it helps. purehealthclinic.co.uk/hist.... I have her histamine factsheet too and it is useful.

You may find this interesting re Sjogren's academic.oup.com/rheumatolo..., and this re POTS dysautonomiainternational.o....

Hope you can get somewhere x

Chancery profile image
Chancery in reply to bookish

Are you able to get back on now, B? Don't want to lose you!

Yes antihistamines are VERY far from an ideal cure. I told the rheumatologist I had a problem with them because I have RLS and antihistamines make it worse. I asked him if I could have Mast Cell Stabilizers instead and he said, 'I don't know if they are available on the NHS', so he looked them up and the only one available was eye drops. Try treating an allergic reaction on your legs with eye drops! I know Mast Cell Activation Disorder is a relatively new discovery and they don't have treatments or tests for it yet, but they know it exists, and some people get it very severely, going into anaphylactic shock and so forth, so quite why the NHS wouldn't have stabilisers for that, I do not know. I wonder at them sometimes. It is, quite literally, 'here is your condition, we think, but we don't have a treatment other than some rather weak meds that folk take for hay-fever. Good luck.' Gee, thanks!

Thanks for the links, I'll go check these out. Hope you are reinstated by now!

bookish profile image
bookish in reply to Chancery

Hello, what a nice thing to say, thank you! Weirdly having a rough day today and I think, stupidly really, it was down to a bad night wondering what I was supposed to have done. Kept thinking I really don't care, not going to get wound up about it, etc etc but it brought back a lot of really bad memories of stuff that went on at work years ago. Anyway as it turns out they had blocked me by mistake instead of someone else so I'm all ok and back in business. Stress has made histamine higher so have been having to be really extra-careful with food today and taking more quercetin. Had watercress tonight and lots of it and will be using plenty of magnesium later! Quercetin is mast cell inhibiting and stabilizing so could be worth a try if you can tolerate it. I use Lambert's.

It is odd how conversations go round - there have been 3 posts on itchiness/histamine/mast cells on the Smart Patients Sjogren's forum over the last few days so I keep looking at the same kinds of problems and information.

What I'd found today was that Dr Brent Goodman says " clinical symptoms of Mast Cell Activation are almost universally seen in my cohort of Sjogren's patients with Autonomic dysfunction. I don't know why this is. I treat MCAS aggressively in SS." (But he doesn't say what with).

Dr Andrew White also believes that the histamine-nerve cell connection is important but says we don't really yet know why treating mast cells can be helpful in a subset of dysautonomia patients. Not clear whether mast cells are playing a secondary role to autonomic dysfunction or mostly mast cell activation triggering the autonomic. He says that the MCAS of dysautonomia is not the same as anaphylaxis or mastocytosis. It may be a case of increased noradrenaline (norepinephrine) impacting histamine.

Also, Sjogren's affects histamine metabolism pubmed.ncbi.nlm.nih.gov/237...

(There seem to be a few different stabilizers mentioned online, but no way of knowing whether you would tolerate them even if they would let you try them. I did find this saying that quercetin compares quite well ncbi.nlm.nih.gov/pmc/articl....

Just saw your NRAS post where you mention the POTS like symptoms - sounds very dysautonomia and certainly could be linked to the mast cells. Next a good neurologist?

Bye for now.

Chancery profile image
Chancery in reply to bookish

Not being nice, Bookish, you're obviously smart, articulate and do your research - that's my kind of gal (assuming you are a gal - can't remember if you said now; that's fibro fog for you!). And I see you're just like me with the anxiety too. I do exactly the same thing. I tend to get very impassioned and don't tolerate fools gladly so I've been banned a couple of times in my sad career and I know how awful it feels, particularly if you've been targeted or wrongly accused. Unfortunately mods can be very lazy and just scapegoat whoever is easiest, but I've never known that happen on Health Unlocked. The mods all take their work very seriously on here and don't jump to conclusions, or take sides generally, which is nice.

Mast cell Activation Disorder/Syndrome is a bit of a monster becasue basically it means your histamine reaction is trigger happy. On one of the links you sent me yesterday I noticed they said you can have severe reactions to bites. I had one about 3 weeks back and had no idea I'd been bitten, so it was something small, probably got me out the grass when I was hanging washing out. I only knew it was there when I started itching, and then it went into a huge lump about the size of a 10p, rock hard, and made all of the underside of my forearm itch. I tried 2-3 different creams and had the most success with Eurax, but I was putting it on about 6 times a day, trying to stop me clawing my arm off. I still have a pink 'scar' now, and all this from some teeny bite, not a bee sting or something. I also noticed a while back that if I walked in long grass I would get itchy stinging ankles for a couple of days after. Not from nettles or anything, it just didn't seem to like grass against my skin.

I've always been a bit reactive, but it's definitely got a lot worse with age.

Thanks for all the links, going to have a good read through them.

bookish profile image
bookish in reply to Chancery

I love your last but one line - I'm a bit reactive to people (fools and others!) as well as everything else, it would seem. And increasingly with age! At 55, not sure I can manage 'gal', feel a bit decrepit for that, but working on it! One of the few nice things my ex-husband used to say was that I wanted things to be fair....it got me into quite some bother. Today we have seen some blue sky so managed to get in the garden and feel much less stressed as a result. But it showed me that although I've come a long way, it still doesn't take much to make a noticeable impact on my health. You are right about the Health Unlocked mods - they do seem like a good bunch and it can't always be easy to hit the right balance.

Interesting about your bite - not for you - glad it has settled. Stupidly, although I had seen that about bite reactions, it hadn't dawned on me that the reason that I ended up going to see a GP (very, very reluctantly) a couple of years back was due to a bite (assumed) so tiny I didn't see it, just hiding under the wheelie bin - it was on my little finger and swelled horribly, wouldn't heal and pharmacist said it needed antibiotics so I had to go, then I reacted to those! I was healing really badly at the time generally and had poor blood flow, even ended up with a pressure sore, (had lost rather a lot of weight - can't digest, and of course you need histamine for stomach acid - if it is all being used elsewhere for reactions you might not have enough left for digestion) but no interest from GP.

I think a lot of people that are coeliac or gluten sensitive would react like that walking in grass, with the families being so related. I haven't tried long grass for a bit so I shall be careful. I've always loved having my feet on grass, but usually just potter around the front lawn, minding the nettle patch because those are a problem. It has been so hot this year that our ants are everywhere so I haven't even been doing as much lawn walking as usual. Even having one of my own hairs touch my skin used to make me feel cold, shivery and sick and I had to get it off it was so intense. The way we sense and feel things is very hard to comprehend. Hypersensitivity, hyperreactivity, neuropathy and all possibly ties back to mast cells/histamine and noradrenaline being out of balance. Did you have EBV or other virus trigger that you know of? Such a lot of AI people seem to have had, and it regularly gets mentioned as thyroid damaging (and that last piece I read said that the thyroid is controlling the histamine/noradrenaline balance). So many pieces of the puzzle, but we'll keep trying to make sense of it. Happy reading x

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