Is there a way to recover from Hashimato’s? - Thyroid UK

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Is there a way to recover from Hashimato’s?

Denide profile image
101 Replies

I have hashimato’s thyroid for more than 10 years and using 75mg Levothyroxine Teva right now. I've got aching joints, feeling low in general but since I started to attend gym it is better. I was under medicated with a doctor I realized later which affected my whole health during pandemic in many ways . The brain fog is here but less powerful. But I feel like there is inflammation between my joints. Especially my left hand.. It hurts and swollen and leaning and skewed. Do you think every health problem is connected to the HT? Really going gluten or daily free helps all the people? I increased my protein intake and trying to eat healthy as much as possible and it helped me. But I still don’t feel healthy. Friends and family don’t believe me and think hashimato’s can’t have such effects.. My GP thinks I should do the blood test every 12 months and she did not change Teva prescription before. I don’t feel nauseous with Teva but I want to try something to recover more.

Please share what helps you? Should be tested in private clinics? And which test should I ask for and what is the approximate price of consulting a private doctor in London?

I am happy to find out the Thyrois UK community. I learn a lot here ✨

101 Replies
SlowDragon profile image
SlowDragonAdministrator

Please add most recent thyroid and vitamin results

ALWAYS test thyroid levels early morning, ideally before 9am and last dose levothyroxine 24 hours before test

75mcg levothyroxine is only one step up from starter dose

Likely to be under medicated and/or low vitamin levels

ALWAYS worth trying strictly gluten free diet. But get coeliac blood test done before trailing

Teva brand levothyroxine upsets many people

Teva is only brand in U.K. that currently makes 75mcg tablets

But likely to need dose increase to 100mcg anyway

Approx how much do you weigh in kilo

Denide profile image
Denide in reply to SlowDragon

Thank you. I am taking the supplements after you gave me the advice. It worked! I am much better right now. I weigh 55kg. I am going to have a blood test this Thursday and I want to share my results here.. How should I convince my GP for a brand change? Do they only change if you have some specific symptoms?

SlowDragon profile image
SlowDragonAdministrator in reply to Denide

Guidelines on dose levothyroxine by weight suggests as a guide

1.6mcg levothyroxine per kilo per day

55kg x 1.6mcg = 88mcg

88mcg x 7 days week = 616mcg

Currently you are on 75mcg per day

75mcg x 7 days week = 525mcg

So you MIGHT need small increase in levothyroxine

Possibly 3 days per week at 100mcg per day and 4 days at 75mcg

If you want to try something other than Teva

Prescription for 75mcg days should be 50mcg and 25mcg tablets…..or an increased number of 50mcg tablets and cut in half to get 25mcg to add to 50mcg

Not lactose free

Mercury Pharma make 25mcg, 50mcg and 100mcg tablets

Accord only make 50mcg and 100mcg tablets

Wockhardt only make 25mcg tablets

Other lactose free brands

Aristo - 100mcg only

Glenmark - not easy to find

Apparently makes 25mcg, 50mcg and 100mcg tablets

Denide profile image
Denide in reply to SlowDragon

I am already on 50mg and 25mg. So I don’t take only 1 tablet. So it does not make any difference with me.

SlowDragon profile image
SlowDragonAdministrator in reply to Denide

You need vitamin D, folate, ferritin and B12 tested too

ESSENTIAL to test TSH, Ft4 and Ft3

Likely to need to test privately to make progress

GP rarely tests more than TSH

Book test for approx 8.45am ….last dose levothyroxine 24 hours before

No vitamin B complex for week before test

Denide profile image
Denide in reply to SlowDragon

I decided to be tested for all you mentioned in September. I am excited for the results. Do you really think I should increase the dosage? What I want is to decrease the level. I’m hearing there are people who managed to do that. But not sure how yet

mauschen profile image
mauschen in reply to SlowDragon

Why should you stop B complex before a TFT?

helvella profile image
helvellaAdministrator in reply to mauschen

Because biotin, which will be in a B complex, can affect the results of tests.

It doesn't change the levels in your blood - but the technology of some tests using streptin-avidin which binds biotin extremely strongly.

It can affect TSH, FT4 and Ft3 - as well as several other tests.

For most of us, stopping biotin a few days before a test resolves the issue. Those on extremely high doses of biotin might have to leave it a little longer.

mauschen profile image
mauschen in reply to helvella

Thank you, I didn’t know this.

SlowDragon profile image
SlowDragonAdministrator

Mercury Pharma listed on pharmacies database as Advanz

Accord also boxed as Almus via Boots or Northstar via Lloyds

SlowDragon profile image
SlowDragonAdministrator

Are you strictly gluten free or dairy free

Denide profile image
Denide in reply to SlowDragon

No. I’m not. I tried to restrict gluten and dairy for 2 months when I was in the worst point, but I only loss weight (I don’t want that) and did not have any+ impacts (maybe did not noticed) Generally gluten free options have more sugar and less protein in my experience. I believe I need carbs and diary as well in a healthy diet. I could not change my idea even after I did my research. If I need to have B complex instead, then they are helpful. Maybe I need to be tested for gluten sensitivity as well?

SlowDragon profile image
SlowDragonAdministrator in reply to Denide

Gluten free diet needs to be strictly gluten free to be effective

Dairy is less critical

Generally eating less processed foods, plenty of good fats, lots of protein

Gluten free cakes, biscuits etc….shop ones generally awful. Home made is way to go

Denide profile image
Denide in reply to SlowDragon

I am cooking most of the time but it is hard to not eat pasta with a steak etc. more often I am using basmati rice since it is gluten free. How many times broccoli and other Cruciferous veggies is adviced in a week for example? It is hard to understand what is the best for health.

SlowDragon profile image
SlowDragonAdministrator in reply to Denide

Gluten free pasta is excellent Does require longer cooking time

You can eat cruciferous veg …..probably not every day ….but 2-3 times a week

silverbelle51 profile image
silverbelle51 in reply to SlowDragon

The Joel Wallach dietary Guidelines I believe is solid, but not all that easy given food easily available. Joel has a cookbook that I think is helpful in guiding food prep , so eating isn't boring and easy to stray from sound eating . It isn't an easy transition . Believe me it has been a process for me and others I know.

Danielj1 profile image
Danielj1 in reply to Denide

Hello Denide

A lot of advice here so please take mine with a pinch of salt - but the one thing I would say is that dairy is the number one disaster zone and had the single biggest effect on conversion of T4 that I can work out. The day I stopped altogether a few months back is when everything turned around.

The other is the huge benefit of fruit and veg smoothies for breakfast to heal the colon - spinach blueberries oat milk bananas and celery

The final thing is finding fish with iodine eg mackerel every day.

If I do nothing else but these three rules I can pretty much “get away with” anything else food wise now

Good luck and I don’t expect this to work exactly the same but there is real hope that we can all make relatively simple changes that makes a massive difference :)

Denide profile image
Denide in reply to Danielj1

Thank you for the tips🙏 You eat healthier than me 😊 I am going to try elimination diet soon 📝

Danielj1 profile image
Danielj1 in reply to Denide

As I say good luck - Eating a ton of spinach daily has been a decent help too ...I still wonder if gluten is a total no no - I just feel gluten free bread has so little nutritional value .... I wax and wane on grains ...but I think the elimination diet works itself out over years and not months ultimately

greygoose profile image
greygoose

The only thing that's really helped me is getting rid of doctors. Self-treating so that I can take the dose and the type of thyroid hormone replacement that I actually need, rather than what they think I ought to need.

Optimising nutrients is crucial, of course. But, eliminating gluten/dairy/sugar/processed foods didn't help in any way. Although I have to avoid soy like the plague. But I honestly wouldn't claim to have a healthy diet - don't really even know what that is, because what's healthy for one person is poison for another. You have to find a way of eating that suits you as an individual.

Finding the right type of exercise, and doing it at my own pace, is another plus. I hate walking, always have. Going to a gym would be a living hell for me, I like my privacy. And I only tolerate swimming in the sea - which is a long, long way from where I live (wouldn't put a swim suit on these days, anyway! lol). So, I have a sort of stepping machine and a rebounder, which are both good exercise, and won't leave me stranded far from home without the strength to get back.

I believe in the power of laughter. For one thing, it's a brilliant breathing exercise, but also lifts spirits and mood. I've worked hard most of my life to make people laugh. And making others laugh is as good as having a laugh yourself.

I will not take any of the drugs pushed on you by doctors - apart from the odd aspirin for a headache or a very rare antibiotic treatment. I won't take antidepressants, PPIs, beta-blockers - and certainly not statins (although I suffer from low cholesterol, not high) - and all the other Big Pharma money-makers peddled by GPs. I realise some people really need them, but I don't, and refuse to take them 'just in case' - especially now I'm older.

I will never be 100% healthy because I had undiagnosed hypo for nearly 50 years, and Hashi's for an unknown length of that time because no-one ever tested me in all that time. So, probably quite a bit of irrepairable damage has been done. Neurological damage for a start. But, I think for 77, I'm pretty good. And if it doesn't get any better, I'll settle for that. :)

Denide profile image
Denide in reply to greygoose

I agree with the power of good laughs 🫶🏽 I don’t understand why there is not enough studies about thyroid hormones and why the medicine don’t care a lot. My mother does not visit doctors as well as you. I am following some Holistic doctors and Functional Medicine Doctors on youtube.

greygoose profile image
greygoose in reply to Denide

I don’t understand why there is not enough studies about thyroid hormones and why the medicine don’t care a lot.

That would make a good subject for a student thesis. Why indeed! One theory is that Big Pharma is making too much money out of 'treating' each and every symptom as if it were a separate disease, and therefore exerts whatever influence it has over what is taught in med schools to down-play the seriousness of the disease, and all that applies to it. I don't know. But, I'm pretty sure that money comes into to it somewhere.

And I have absolutely no faith in holistic or functional medicine. From what I've read about it, they have no real knowledge, just a lot of crazy ideas.

Denide profile image
Denide in reply to greygoose

More of it, so expensive.. yeah

mauschen profile image
mauschen in reply to greygoose

I agree with you wholeheartedly!I too have come to the conclusion that I am better off without consulting a doctor. In fact, I would go as far as to say that I would probably be dead by now if I hadn’t taken charge of my own body.

That does not mean that I advocate not consulting your doctor or taking prescribed medication. I do in most cases. I mean that for me, it was the right decision.

The older I got, the more I realised just how the pharmaceutical industry functioned and I didn’t like it.

Thyroid medication is big business!

When I lived in Germany, a pharmacist told me that 80% of the adult community in the town where I lived was prescribed Levothyroxine. She laughed but I was really troubled by her statement.

A friend from India, who was diagnosed with hypothyroidism, would return home for the winter. Whilst there, her TFT would be normal and her local doctor blamed the water and would stop her Thyroid medication recommending instead adding Jod salt to her diet.

I follow Thyroid research and am disappointed to note that we don’t seem to be moving on. Research is stuck in a time warp with many current researchers referencing dated articles.

When the scientists get it right suggesting a more holistic approach to treatment and care, it doesn’t appear translatable to NHS practice.

What is the purpose of research when policy doesn’t support change?

greygoose profile image
greygoose in reply to mauschen

A friend from India, who was diagnosed with hypothyroidism, would return home for the winter. Whilst there, her TFT would be normal and her local doctor blamed the water and would stop her Thyroid medication recommending instead adding Jod salt to her diet.

I'm really not sure what you're saying, here. It is very, very rare to be diagnosed with hypo when you're not hypo - it's usually the other way round! Doctors hate diagnosing and treating hypo, they'll let you suffer for years without a diagnosis or treatment if they can get away with it.

Wouldn't her TFT be normal because she was being treated for hypo? Which water is her doctor blaming? Water in the UK or water in India? What is Jod salt? And how would that help?

mauschen profile image
mauschen in reply to greygoose

„I'm really not sure what you're saying, here“.I am saying exactly what I have written.

The main theme of this thread is asking about a cure for Hashimoto thyroiditis.

My friend from India took Levothyroxine for 3 years before trying Iodinised salt (Jod salt) in her diet and has never needed Thyroid hormones since then.

She was definitely diagnosed hypothyroid by a consultant Endocrinolgist. After approximately two years, she was confirmed as having type Hashimoto with holes in her thyroid gland to prove it.

The doctor was blaming the water in Germany where we lived at the time.

Iodinised salts treat iodine deficiency.

I remember a story about a village in Wales where many people had signs such as Goitre and symptoms of hypothyroidism. It was found that the people had been gathering water from a well and iodine deficiency was the cause of their problems.

greygoose profile image
greygoose in reply to mauschen

Sorry, but none of that holds water. Hashi's is diagnosed by antibody levels. If her antibodies were over-range she had Hashi's, and that just doesn't go away. Most certainly iodine didn't make it go away! More likely to make it worse. Hashi's has nothing to do with iodine deficiency. And to take iodine without checking levels first is foolhardy to say the least - been there, done that, ended up ten times worse.

What does happen with Hashi's is that between a 'hyper' swing and coming back down to hypo again, you can have a long period of euthyroidism. That is when people decide they have 'cured' they're Hashi's by whatever means. But, it won't last. Eventually they will become hypo again.

mauschen profile image
mauschen in reply to greygoose

I don’t need to „hold water“ with you. I am free to post about lived experiences. I did not make this story up. My friend is a qualified pharmacist and is well aware of anatomy and physiology, medications and supplements.Just because I didn’t mention TPO doesn’t mean that antibodies weren’t measured. I did however state that her diagnosis was made by an endocrinologist which should have been sufficient.

On ultrasound, the obvious holes in her thyroid gland was another giveaway for an autoimmune attack.

Whether or not blood levels for iodine were checked, I couldn’t say. But it’s neither here nor there. Furthermore, Iodinised salts are a dietary supplement which can be bought in the supermarket. Therefore, I feel that you are over reacting to my post.

I never at any point said that my friend is cured, merely that her blood results remain stable without the need for Levothyroxine. Who knows what the future holds however, the lesson to be learned here is that iodine is essential for a healthy thyroid gland. A deficiency can lead to goitre , hypothyroidism and symptoms of extreme fatigue and mental illness .

Personally, my antibodies are normal and have been for several years. Nevertheless, I get symptoms of hypothyroidism from time to time and need to adjust my T3 & T4 medication.

The point being, we are all unique and Thyroid disease affects us all differently.

greygoose profile image
greygoose in reply to mauschen

Ohhhhhhhhh sorry I spoke!

But, no, iodine is not necessary for a 'healthy' thyroid, it's nothing to do with thyroid health. Iodine is just one of the ingredients of thyroid hormone. Obviously if you don't get enough the thyroid can't make enough hormone, and enlarges - a goitre - to try and absorb more iodine. But too much is also bad, and iodine supplementation and Hashi's just don't go together. And I don't want the OP to get the wrong idea about iodine because taking it could make her ten times worse. My respone was more for her than it was for you, so she could see both sides of the subject.

mauschen profile image
mauschen in reply to greygoose

ign.org/cm_data/2006_Zimmer...

greygoose profile image
greygoose in reply to mauschen

Nowhere does it say that iodine makes the thyroid work better. As I said before, iodine is necessary because it is one of the ingredients of thyroid hormone - one molecule of T4 contains 4 atoms of iodine. But, it is not a magic potion that increases the efficiency of the thyroid, and cannot make a failing thyroid work better - especially if it is failing due to Hashi's. So, of course iodine deficiency impairs thyroid function, it can't make hormone without the ingredients anymore than you can make a cake without flour, eggs, butter, etc. But, if your oven is on the blink, you still won't get a cake, even with the right ingredients.

mauschen profile image
mauschen in reply to greygoose

I never claimed that iodine makes the Thyroid gland work better?You said “But, no, iodine is not necessary for a 'healthy' thyroid, it's nothing to do with thyroid health.”

Anyway, let’s leave it at that as we are wandering off topic.

helvella profile image
helvellaAdministrator in reply to mauschen

A deficiency can lead to goitre , hypothyroidism and symptoms of extreme fatigue and mental illness .

So too, it appears, can an excess:

Hong-Liang Liu, Lawrence T. Lam, Qiang Zeng, Shu-qing Han, Gang Fu, Chang-chun Hou, Effects of drinking water with high iodine concentration on the intelligence of children in Tianjin, China, Journal of Public Health, Volume 31, Issue 1, March 2009, Pages 32–38, doi.org/10.1093/pubmed/fdn097

mauschen profile image
mauschen in reply to helvella

Yes thank you,I am aware of the adverse effects of too much and too little iodine.I feel that we need to leave the iodine topic, interesting as it is, as we are wandering off topic.

CapnM profile image
CapnM in reply to mauschen

"my friend who saw a local doctor in India" is hardly a "lived experience", we should be careful of re-posting 3rd party and unverified acecdotal stories on a health forum, best keep it to your own direct evidence. Any health story that goes against established experience with format of ' my friend x had y and took z and is now recovered' is not worthy of repeating. its the land of snake oil salesmen.

there are be many many reaons why returnign to India for winter could change your thyroid levels and overall well being. thanks,

mauschen profile image
mauschen in reply to CapnM

As far as I am aware, it is not against the rules to post about a 3rd party lived experience.My friend is an educated healthcare professional, who shared concerns about her hypothyroid symptoms and her blood results with me.

She returned to India every winter and always felt better when she was there. Of course there might have been influencing factors affecting her hormonal status. However, on her return to Europe, I witnessed blood and investigations results. Moreover, I observed first hand the positive changes in her well-being.

Phenomenologists study lived experience. They interview subjects in order to hear stories about their lived experience. They analyse the narrative searching for deeper understanding and meaning, then they disseminate their findings.

So yes, I believe that I was qualified to tell my friends story, put forward her lived experience.

Is she cured? I don’t know. Has her condition improved? Yes it has !

Blood results are now within normal range for Indian and European standards. Did I think that her story might be relevant or even helpful? Yes I did.

Are you challenging me because you think the story is false?

Incidentally, you have a beautiful dog😆

helvella profile image
helvellaAdministrator in reply to mauschen

Did you mean this:

Journal Article

A Goitre Survey in the Vale of Glamorgan

W. R. Trotter, A. L. Cochrane, I. T. Benjamin, W. E. Miall and D. Exley

British Journal of Preventive and Social Medicine

British Journal of Preventive and Social Medicine

Vol. 16, No. 1 (Jan., 1962), pp. 16-21 (6 pages)

jstor.org/stable/25565288

Appears to say the difference was consumption of fish - rather than water supply.

mauschen profile image
mauschen in reply to helvella

Thank you for this reference. I have now sourced the full text article which I have read with interest. It doesn’t appear to be a trustworthy study as there are hints of bias throughout.This is not the article I remember but it was set roughly around the same timeframe and location .

helvella profile image
helvellaAdministrator in reply to mauschen

I trust it in that the authors appeared to be aware and honest about the limitations.

But no, it is not definitive.

Perhaps you can locate the story you referred to?

mauschen profile image
mauschen in reply to helvella

If I get time, I will do a literature search and open a separate post

helvella profile image
helvellaAdministrator in reply to Denide

I don’t understand why there is not enough studies about thyroid hormones

You might be surprised that, within the database of research studies, PubMed, there are over 62,000 papers which refer to levothyroxine, over 33,000 which refer to liothyronine, over 10,000 which refer to the well-known anti-thyroid medicines.

I don't consider the number to be the important factor that has limited understanding. It has been a combination of:

Their quality - lots are pretty poor quality.

Their size - lots have too few subjects to draw meaningful conclusions. Single subject case reports can be very interesting but they do not provide statistical power. Small studies can provide hints but, again, insufficient statistical power.

The understanding of what studies are needed. We still do not have studies which ask (and, hopefully, answer) some fundamental questions.

Their fundamental assumptions. Such as accepting TSH alone, and without regard to time of test. Or including FT4 but without considering time of test along with time of dose.

Treating a complex system as super-simple even when it is known that approach undermines logic.

Denide profile image
Denide in reply to helvella

I really need to find a way for be tested for T3. Do you share the brand you use if you don't mind?

helvella profile image
helvellaAdministrator in reply to Denide

I don't take any T3!

But I do have a list of many products which are produced around the world.

helvella - Thyroid Hormone Medicines

I have created, and try to maintain, a document containing details of all thyroid hormone medicines in the UK and, in less detail, many others around the world.

From Dropbox:

dropbox.com/s/wfhrlmb5983co...

From Google Drive:

drive.google.com/file/d/11z...

Denide profile image
Denide in reply to helvella

Super helpful to me. Thank you ✨

SlowDragon profile image
SlowDragonAdministrator in reply to Denide

Use private testing companies

Monitor My Health Is cheapest for just TSH, Ft4 and Ft3

But you need to test Vitamin D, folate, ferritin and B12 at least once a year

Medichecks is usually cheapest for thyroid and vitamin testing

Only do private testing early Monday or Tuesday morning, ideally just before 9am ….last dose levothyroxine 24 hours before test

Denide profile image
Denide in reply to SlowDragon

Thank you for it. I was looking for it ✔️

jgelliss profile image
jgelliss in reply to greygoose

🤣🤣🤣 Laughter is the best medicine. GG you make me laugh. You have great sense of humor.

greygoose profile image
greygoose in reply to jgelliss

That's what I like to hear! lol

arTistapple profile image
arTistapple in reply to greygoose

I think you should re-name yourself Golden Goose.

greygoose profile image
greygoose in reply to arTistapple

How kind of you to say so. Thank you. :)

jgelliss profile image
jgelliss in reply to arTistapple

Agreed.

Longinthetooth profile image
Longinthetooth in reply to greygoose

Can I just say Grey goose, what a brilliant outlook you have. You give out so much advice to others yet have had to contend with your own issues. I found this post very uplifting. I also like to laugh (best medicine) & am a private person (typical Scorpio). I haven't posted anything for a good while but had to reply to this.

greygoose profile image
greygoose in reply to Longinthetooth

Thank you. Very kind of you to say so. :)

Gsd2011 profile image
Gsd2011 in reply to greygoose

What a great reply I enjoyed the read

greygoose profile image
greygoose in reply to Gsd2011

I'm glad. I hope it helps in some little way. :)

Rapunzel profile image
Rapunzel

Things that helped....well that's a long story Denide!

In no particular order, but all helpful to me personally:

As greygoose has said - flipping off my GP and doing my own research was more than useful. T3 and NDT ( Thyroid S atm...) certainly helped

Magnesium supplementation reduced my inflammation marker (CRP) significantly

Vaping cannabis keeps me on my feet - my knees are shot - because I'm a big bird now, due to listening to my GP for the first 18 months following my diagnosis - but my dancing days are over 😢

Acceptance is something I still work on. I was lean as a whip before this started and often my working day was 5-9 rather than 9-5...gone, baby gone. Sometimes I have an afternoon nap these days 🙄

I've had to turn my work life upside down and although I manage to continue working, it's in an altogether different discipline. This is nobody's fault: not mine, not my clueless GP. After all, he didn't devise the training programme for his learning and I can't be held responsible for simply being a woman - much more prone to thyroid issues...

Taking anti-depressants...unlike grey goose, I do need them and doing without turns me into a shouty mare...not fair on my family and friends.

We are all different and regrettably what works for one is no guarantee that it will work for another. This is a sack of snakes and no mistake. Best wishes

greygoose profile image
greygoose in reply to Rapunzel

Oh! That reminds me: I forgot the CBD oil, which helped enormously.

Shouty mare! lol

Denide profile image
Denide in reply to greygoose

I heard about the benefits, will check this out🤙🏻 I am using Magnesium oil topically, it helps but irritates the skin in my case. This changes person to person however. I can recommend you to try

Rapunzel profile image
Rapunzel in reply to Denide

try the cream Denide betteryou.com/products/magn...

Denide profile image
Denide in reply to Rapunzel

Thank youu Rapunzel I am going to try. I hope it does not irritates my skin as much as Magnesium oil✌🏼I hate this soreness. 🥹

greygoose profile image
greygoose in reply to Denide

I really did not like magnesium oil. It felt horrible on my skin. Much prefer to take the tablets.

Rakaia profile image
Rakaia in reply to Denide

Hi Denise just wondering what type of mag you spray and how much and how often?Thank you🌸

Denide profile image
Denide in reply to Rakaia

Hi @rakaia I did use Life-flo Pure Magnesium Oil Spray. Unfortunately it cause me itchy skin. I am sure it did lessen the soreness. I bought a small size magnesium oil with BetterYou to try. I found it less irritating. I hope it helps 🌻

Denide profile image
Denide in reply to Rapunzel

Thank you so much for sharing the tools with me. 🙏 I think we only understand each other’s suffering. Since it is not diabetics or cancer, it's effects on us is not understandable for most of the people. The changes I experience with Hashimoto’s had a big negative effect on my confidence and joy. Since scientists have developed covid-19 vaccine in a very short time, I believe the science can understand and solve thyroid problems. Maybe it is too much to ask, I don't know. We all do our best to feel better, healthier. If one find something truly helpful, I am going to share 🙏🙏🙏

Jomo2021 profile image
Jomo2021

Hi, just a thought… I have inflammation between the joints and skewed fingers (along with other painful joints) - the GP referred me to a rheumatologist and I have psoriatic arthritis. This is autoimmune as well so common to have both. I don’t have psoriasis with it - only on my scalp which I thought was dry skin. Might be worth googling and seeing if it fits.

Denide profile image
Denide in reply to Jomo2021

Hi Jomo2021 , thank you for sharing! How do they test the inflammation and arthritis? I know something going on, I am feeling what happens in my body as inflammation. But what happens the doctor think it seem normal

My left hand especially skewed and hurts.
silverbelle51 profile image
silverbelle51 in reply to Jomo2021

I returned to massage therapy a year ago 1 x month and recently Glucosamine 1500 mg 2 x daily and I believe it has helped cause the joint/muscle pain has been disabling to daily activity it just stole all my energy and elevated my BP. It is trial and error for me as well.

caledoniancat profile image
caledoniancat

Hi Denide "But I feel like there is inflammation between my joints. Especially my left hand.. It hurts and swollen and leaning and skewed. ", sounds like this could be Rhumatoid Arthritis (RA), particularly with the skewing. Going by Jomo's experience, it would be worth getting some tests done. Best to be identified in the early stages so you know how to manage and to reduce future difficulties with function.

Denide profile image
Denide in reply to caledoniancat

Yeah if it is RA, I prefer to face with the diagnosis now.

silverbelle51 profile image
silverbelle51 in reply to Denide

I have found doctors here in the U.S.A. are far better at building "Problem Lists" than diagnosing and solving problems.

mauschen profile image
mauschen in reply to silverbelle51

When I lived in Germany, the doctors were great at telling you what it wasn’t rather than what it was.In Scotland, I can‘t see a doctor so doubt that there will be any interest whatsoever in how I feel.

Jomo2021 profile image
Jomo2021

There is an inflammation marker blood test but lots of people are ‘seronegative’ which means it doesn’t show in bloods. The rheumatologist diagnosed me based on sore / inflamed /joints and wonky fingers! they did an ultrasound which showed fluid in joints. There are a few different inflammatory arthritis type conditions, but it’s important to get diagnosed early. I would push for a rheumatology referral.

Denide profile image
Denide in reply to Jomo2021

Wow. Thank you. I hope I get the referral and then what happens? Do they give us medicine for it? I really don't have a clue with this health problem 😃

Myish profile image
Myish

Hi Denide… good luck finding some help moving forward with this … I have had under active thyroid for over 30 years and although cannot offer much in the way of advice …. You have definately come to the right people to get great help and advice… I’m learning more here than I ever expected from great helpful people … good luck

Denide profile image
Denide in reply to Myish

Thank you so much. Good luck for all of us and I love this forum. I feel lucky to find the community to ask and share.

CoeliacMum1 profile image
CoeliacMum1

HiCommenting from the aches and pains side of things, my main problem is muscular skeletal issues…getting rid of the 2 prescribed lactose free levothyroxine (Teva & Aristo) was a big step for lowering my TSH and feeling partially better.I’m in process of getting my nutritional markers better to help thyroid hormone conversion, and possibly supplementing with selenium & zinc, as heard this helps with thyroid antibodies side of autoimmune Hashimoto’s, I’m still researching this, I feel I do eat enough of these areas, but do have absorption issues, hence I may have to supplement.

I’m coeliac, so a very strict gluten free diet for me and rarely eat processed gf things I stay clear of the free from aisle.

I like to stay clear of supplement and pharmaceutical intervention if at all possible… the least we take, the better in my opinion… however if need something I take it but will always look for a natural way, sometimes it’s unavoidable for various circumstances.

Many under estimate how diet and lifestyle can impact our well being, too much insulin from eating unhealthily.

Stress drives hormones crazy and who isn’t stressed these days, and of cause as women age menopause comes to throw a spanner in the works upsets the balance of things again. Hrt definitely help my joints though.

I started taking T3 late last year (poor convertor) it definitely made a difference to my muscle recovery I noticed, I’m not totally ache free but I couldn’t get out of bed unaided or dress and shower myself early 2020.

If I did anything my muscles would spasm (I don’t think it helped not being listened to by GP initially, so every episode over 8 yrs or so, I’d get tense not good for spasms) my muscles would take weeks to recover from what ever triggered it, which was as simple as turning over in bed, stretching to reach something.

With T3 and a lowered TSH as mine was always over 2 I found now if I rested for short time I could get up 30 mins after and do a bit more, I’ve been building up for good 9 months or so now so a slow approach, slowly not going like a bull at a gate, and many with autoimmune conditions have mentioned exercise slowly is key as we kind of work slightly different or at least we probably get best results with this method… but we are all different.

I’m generally doing most day to day things now but carrying my 8th watering can daily to my garden up 10 steps is tiring, glad of the rain recently saved me couple of trips as had newly planted trees prior to heatwave 🤦🏻‍♀️

So I’d say I’m doing well up to now.

I hope you find some help on the forum. 😊

silverbelle51 profile image
silverbelle51 in reply to CoeliacMum1

Rings true

Denide profile image
Denide in reply to CoeliacMum1

CoeliacMum1 It is great you found ways to feel better. Magnesium oil did lessen the pain and really helpful in general since it is more absorable via skin but it irritates my skin. I got a recommendation in this forum to try magnesium lotion from Better and Hemp Seed Oil. I hope we all find our cures on the way. ✨

CoeliacMum1 profile image
CoeliacMum1 in reply to Denide

I use Neom Magnesium butter, it’s lovely, I use the perfect nights sleep fragrance, I do also have bedtime heroes which is lighter in fragrance for a change.The topical delivery, the only snag we don’t know how much we’re absorbing, all the same if it helps guess it doesn’t matter.

No idea if true but I did read sometime ago somewhere, if topical magnesium tingles on the skin after applying it’s an indicator that you really need it, and should subside, but if it gives a visible reaction of course don’t use it… could it be the carrier oil that was the problem ?

Anon_77 profile image
Anon_77

For me teva is the worst it never helps me never seems to work I’ve reported it to yellow card so maybe it isn’t working for you also just an idea x

Denide profile image
Denide in reply to Anon_77

Wish me luck. I want to change teva after using since 2019. Which new brand do you advice Anon_77 ?

Anon_77 profile image
Anon_77 in reply to Denide

Hya x well I’ve been using north star and tried not to change that as it seems “okay” ish but I think I’m a poor converter so some days not so good but I’m also on T3 ;) I want to trial Tirosint but hard to get hold of in the uk but supposed to be a purer form of T4

CoeliacMum1 profile image
CoeliacMum1 in reply to Denide

Sorry to jump in …Pharmacist should now be aware of brand differences, they should of had this memo and should provide you with what is good for you, if not, give liquid levothyroxine which is much more expensive to them, so they often try to give you what you prefer, maybe ask your GP if can change a brand on your prescription stating one type, see if makes any difference…I just told mine I didn’t get on with lactose free … a very helpful nurse with hypothyroidism at my surgery told me her daughter who works in pharmacy has had this update.I use Almus and accord 100mg, although I do alternating days with wockhardt 75mg (3x25mg)

Denide profile image
Denide in reply to CoeliacMum1

Hi CoeliacMum1 good morning Again so helpful. I found it interesting there is many alternatives to Teva. I was not aware there exists liquid levothyroxine. Probably there is a price difference. Yeah. I checked the replies but I am still not sure which brand I should ask to my GP. I am also looking for T3 since yesterday but some articles are speaking negatively about Armour Thyroid. Makes it difficult to self medicated myself. I don't want to give more harm while trying to be proactive 😅

CoeliacMum1 profile image
CoeliacMum1 in reply to Denide

I have had Morningside & Mercury T3 prescribed and monitored by an endocrinologist.These 2 are I believe the registered ones in U.K not sure if there’s others . … that’s all my endocrinologist will prescribe.

I have no idea what the others are unfortunately so cannot help you there.

There is a list of all drugs on here somewhere, try searching for it on here.

Or someone may pop a link to it.

I’m better with Accord/Almus brand of levothyroxine, they don’t do 25mg so guess depends on your dosage.

Unless you need lactose free ones there’s few to try.

helvella profile image
helvellaAdministrator in reply to CoeliacMum1

There are six UK licensed liothyronine suppliers. (Not all supply all dosages.)

helvella - Thyroid Hormone Medicines

I have created, and try to maintain, a document containing details of all thyroid hormone medicines in the UK and, in less detail, many others around the world.

From Dropbox:

dropbox.com/s/wfhrlmb5983co...

From Google Drive:

drive.google.com/file/d/11z...

Thyroid2468 profile image
Thyroid2468

I agree that also have other autoimmune markers tested at rhemotologist or possibly GP. Often we can have more then one autoimmune. just a thought....

Omze profile image
Omze

Hi First of all autoimmune thyroid people need a dose of thyroxine in the range of 1.8 - 2.6 mcg x body weight

Ur middle finger is developing bouteniers deformity hall mark of synovitis of inflammatory joint disorder like rheumatoid or gout

Rheumatoid , gout and autoimmune thyroid are sistern disease

Stop the eldest sister autoimmune thyroid by increasing the dose as I mentioned and others will go away

Hth

helvella profile image
helvellaAdministrator in reply to Omze

First of all autoimmune thyroid people need a dose of thyroxine in the range of 1.8 - 2.6 mcg x body weight

I find that a questionable statement.

First, not all autoimmune thyroid people have reached the point of non-functioning thyroid. For them, such a dose would very likely be too much.

Second, even with zero thyroid function, that starts higher than most recommendations - which are usually around 1.6 micrograms per kilogram. (And questions about whether that really is total weight or lean body mass or some other calculation.)

Third, it totally ignores the possibility of any liothyronine (T3) component of treatment.

Fourth, it totally ignores so-called Hashimoto's flares.

There appears to be not one single paper on PubMed which associates Boutonnière Deformity and thyroid. One paper associates it with gout.

bssh.ac.uk/patients/conditi...

Denide profile image
Denide in reply to Omze

Thank you for your review. Omze I will try to stop all autoimmune disease happening inside if I can 🥹

JenniferW profile image
JenniferW

Hi Denide

Hashimotos is an autoimmune condition where your antibodies attack your thyroid. Your immune system can go onto attack your body in other ways. Swollen hands and joints can mean lupus or rheumatoid arthritis, please go to your GP with your symptoms. They can do blood tests to check for other indicators of these and other problems and if necessary refer you to the rheumatologist (or other consultants if something else is indicated). If it is lupus or RA the sooner it is diagnosed, the sooner it can be brought under control and reduce long term damage.

Best Wishes

Jennifer

Denide profile image
Denide in reply to JenniferW

Thank you so much for your comment JenniferW . I possibly have extra issues and I did postpone to speak with a doctor to face about new problems. I am going to see my GP as soon as possible and ask referral. Your comments encouraged me to do so.

Persevere99 profile image
Persevere99

Hi Denide

Finally, after adding some self sourced T3, to my 100 Levo, I feel so much better.

I take 12.5 twice a day.

The fatigue, which was my main symptom, is almost totally gone now and I have been able to step up my running and swimming again to my former decent level.

All the best

Persevere 99

Denide profile image
Denide in reply to Persevere99

Wow 😀 It is the comment I am looking for. Happy for you. I will take T3 to see if that works.

lynnimp profile image
lynnimp

I was originally diagnosed in the US for which I am grateful. More enlightened the approach to Hashimoto's than in the UK -- but the NHS is stressed -- so it's one size fits all. I need to take T3 (liothyronine) because I don't convert T4 (levothyroxine). Find a private doctor. You can schedule a Medichecks blood test yourself-- and see all your thyroid levels. You should be able to get stable and feel well. Good luck!!

Monkey0261 profile image
Monkey0261

Hi Denide, there are so many wonderful and varied responses to your post and mine will be just a small contribution. I was diagnosed with Hashimotos in 2006 through a medical MOT that I attended. I didn’t have many symptoms only cold hands and feet and like you I did not have weight gain, I was 52 Kilos at the time. Between 2009 and 20011 things changed and I was exhibiting all symptoms including weight gain. At the time my bloods were being tested however only for TSH. This was below recognised limits in the country I lived at the time and my condition grew worse. I did two things, I found myself a really good Endocrinologist who specialises in thyroid dysfunction also who understood Hashimotos and I started to follow researchers of Hashimotos like Dr Izabella Wentz who is also someone with Hashimotos thyroidpharmacist.com/about/I have been gluten, dairy and soy free for 10 years (I do use gluten free soy sauce only) and this has made a huge difference to my health. Like you after some years I started to have really bad pains in my wrists and my Endocrinologist checked my D3, then put me on a high dose which I take all year except in high summer. I am also on vitamin B12 which does make a difference to my foggy brain and humour. Again,, you have received fantastic feedback from the wonderful contributors here (that have kept me going over the years) my contribution is small, and my first however, as a fellow Hashimotos sufferer I hope this will give you some more insights and some empathy.

Denide profile image
Denide in reply to Monkey0261

I used solgar b complex and supplemented with D3 during winter time. It really helps but even my grandmother does not take as much as supplement to feel okeyish. 😅 In my case having supplements are also helping but I really want to get rid of the source of the problem itself. But going gluten free is only possible for me if I learn I have coeliac disease. Hashimoto's did not increase my weight interestingly. That's why if I leave carbs, I loss 2-3 kg immediately which is not desirable for me.

Eddie83 profile image
Eddie83

Hashi's can be caused by allergies/intolerance to certain foods, and/or the increasing load of environmental pollutants like heavy metals, herbicides, etc. In my case, Hashi's was definitely caused by my life-long intolerance to gluten, which wasted my gut, and that precipitated autoimmunity. Some conditions like gluten intolerance can be tested for. If you need to look for a solution inexpensively, one way is to have your TPO and Thyroglobulin antibody levels quantified via test, then go on a very clean, low-allergen diet and re-check antibodies at intervals of about 6 months. Checking for environmental pollutants is much more involved and expensive; you need an MD or ND who has training and experience in environmental medicine, and there aren't many of those.

Denide profile image
Denide in reply to Eddie83

Seems to me a good idea. Eddie83 Thanks you. ✌🏼How did you incorporate gluten free or allergen free meals to your life? As I know, even most of the nuts are allergen. Did you work with a dietitian?

Eddie83 profile image
Eddie83 in reply to Denide

I worked with an ND who was able to home in on gluten intolerance via the use of gliadin antibody and TTG tests. I do not have any obvious signs of allergy to nuts, although I am very aware that nut allergies exist because my grandson is violently allergic to cashews. In general, I avoid high processed "junk" foods that contain long lists of questionable ingredients, and use as many fresh foods with the 'organic' label as I can afford. I consider myself very lucky to have found the relatively simple solution of avoiding gluten (although it took a long time) because I have several friends with more complex problems (e.g. Lupus, MS) who have tried all sorts of different things, without positive results.

Denide profile image
Denide

eddie73 I have allergic rhinitis as well. But this summer went better (less allergic days) than last summers.

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