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Thyroid UK
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High Thyroid antibodies, multinodular goitre but normal thyroid levels, inflammation and neuropathy. No help from doctors

Hi I'm a first time poster here and was hoping I could get some insight on my condition. Please excuse my very long post.

I'm a 33 year old mum of two,and have a multinodular goitre that was diagnosed back in 2013 with the consultant radiologist stating that my thyroid was extremely inflamed, and would need to be removed at some point. His report recommended a referral to an endocrinologist, as well a nodule biopsy. On speaking to my GP, I was informed that they had essentially vetoed his recommendations, and said I was fine and no further tests or consultations were needed.

Fast forward to 2017 and my already thinning hair was now so bad my scalp was visible, my fatigue was indescribable, the anxieties, insomnia and depression so extreme, the weight fluctuations had increased, as well as feeling constantly cold, the dry skin was on another level, and the low immune system meant I was getting sick every other week.

In October 2017 I had a particularly nasty cold which left me in bed for a week, three days later I had suddenly lost sensations and feeling in my three fingers on my right hand. The nerve pain was indescribable, and it left me unable to even hold a pen or dress myself. I went to a private neurologist who ran a battery of tests and scans and pretty much everything he could think of- everything was coming back as normal. By this point the numbness had spread to my left foot. Again, all tests were coming back as negative apart from my Thyroid Antibodies which were a whopping 200 as well as my ANA at 132.

It has now been 8 months, and although there have been some slight improvements to the numbness, I'm still far from well and normal. I have asked my doctors to consider my previously diagnosed goitre and Thyroid inflammation as a possible basis for hashimoto's and the possible cause for my current issues, but keep being dismissed and told that Thyroid doesn't cause neuropathy.

I have now been offered a steroid infusion of 500mg as well as a daily dose of 20mg for 3-6 months to try and reduce the inflammation which they believe is causing the nerves to be compressed and in turning causing the neuropathy.

I've been told that my symptoms don't fit any particular auto immune disorder, but they're pushing me to take strong immunosuppressants like methodextrate which I have firmly refused. I'm now really depressed and feel like there's no hope left. I just would really like to hear any of your thoughts or advice on my case.

Many thanks

52 Replies
oldestnewest

Welcome, DaisyBelle85, to our forum. Members will respond when they read your post.

Your case isn't unusual. The fact is that if you have thyroid antibodies in your blood you should be prescribed - even if blood tests aren't high enough to be diagnosed.

The biggest problem in the UK is that it has been deemed that we should not be diagnosed until the TSH is 10. Whereas in other parts of the world we will be diagnosed when it reaches 3+.

I am not medically qualified but would not start steroids yet. Doctors are willing to prescribe for each of the separate symptoms we have but not have the gumption to prescribe a trial of levothyroxine.

You need a brand new test - if GP or lab wont do all you can get a private test. One, Medichecks has a special offer every Thursday which might suit.

First, tick off your symptoms below:-

thyroiduk.org.uk/tuk/about_...

All blood tests for thyroid hormones have to be at the earliest possible, fasting (you can drink water) and if you were taking thyroid hormones (usually taken first thing with one full glass of water) don't take before test but afterwards.

You need TSH, T4, T3, Free T4, Free T3 and thyroid antibodies. B12, Vit D, iron, ferritin and folate. Always get a print-out of your results with the ranges. Ranges are important as labs differ.

NHS wont do all of the above but the ones not done you can get private or just get the whole ones if you wish.

GP should test vitamins/minerals as deficiencies can also cause symptoms.

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Hi Shaws, thank you for your insightful response.

The last thyroid tests I had were done by my neurologist privately, however it does not include all the ones you have mentioned.

They were done in Dec 2017 and Oct 2017 respectively, and the results were as follows:

Ferritin: 17 normal range being (13-50)

28 " " " "

TSH: 0:83 normal range being (0.27- 4.2)

1.23 " " " "

FT: 17.1 normal range being (12.0- 22.0)

15.4 " " " "

FT3: 4.9 normal range being (3.1- 6.8)

4.9. " " " "

B12: 621.5 normal range being (197-771)

As you can see, even with me seeing a private doctor, they have only tested the above in relation to my thyroid. I really appreciate your guidance

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We measure B12 differently in the US and my range has totally different numbers. Yours looks to be in the high range which might cause a doc to think you are fine re B12. But could you have an absortion problem? If it were me I would look into this to see if supplements might possibly help your neuro sx. Certainly worth trying before starting steroids. Sometimes they are needed but steroids are not without their problems. Remember your B12 is only showing your blood level not if your body is getting the B12 it needs. I'm going through working on getting rid of some neuro/psych sx myself so I'm hoping this info might help you too. Take care. xx irina

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Me again. Sometimes, IMO, doctors get so excited about fancy, expensive solutions to medical problems they forget that good medicine means starting with a less invasive and avoiding a potentially harmful treatment as a first line of defense. And if our symptoms improve we have our answer and there is no need to go further. Simple!

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Low B12 is extremely common with Hashimoto’s

You must get vitamin D, folate, ferritin and B12 tested

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DaisyBelle85

Have you had any recent thyroid tests?

Have you had vitamins and minerals tested:

Vit D

B12

Folate

Ferritin

Neuropathy can be caused by low B12.

If you have any results, please post them with their reference ranges for members to comment.

I understand you reluctance to go down the steroid route.

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Hi SeasideSusie, thank you for your response.

I have posted my results in my response to Shaws, if you'd be so kind as to check them.

Many thanks

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DaisyBelle85

Ferritin: 17 normal range being (13-50)

28 " " " "

Oh wow! That is seriously low. I think you'll find the range is actually 13-150.

For thyroid hormone to work (that's our own as well as replacement hormone) ferritin needs to be at least 70, preferably half way through range. I've seen it said that for females 100-130 is best.

I think you should have an iron panel and full blood count to see if you have iron deficiency anaemia. You certainly need something done about it so ask about iron supplements, but find out first if you do have iron deficiency anaemia.

You can help raise your level by eating liver regularly, maximum 200g per week due to it's high Vit A content, and including lots of iron rich foods in your diet apjcn.nhri.org.tw/server/in...

**

B12: 621.5 normal range being (197-771)

That's pretty good and doesn't explain the neuropathy. But was Folate tested? B12 and folate work together.

**

Vit D is extremely important to test.

**

TSH: 0:83 normal range being (0.27- 4.2)

1.23 " " " "

FT: 17.1 normal range being (12.0- 22.0)

15.4 " " " "

FT3: 4.9 normal range being (3.1- 6.8)

4.9. " " " "

Your TSH is good but your FT4 and FT3 are quite low at just about half way through range. However, as no-one is ever tested to get a baseline, that might be your "normal".

I think it's important to get thyroid antibodies tested, along with folate and Vit D, to get a full picture.

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Thanks for the the advice SeasideSusie!

I've just had a look at my results, and my folate was 19.8

My haemoglobin was 129 with my red cells being 4.22

The thyroid antibodies were 250 btw, I mistakenly wrote 200 in my first post

My vitamin D was never checked, however I do know from previous tests that I always have very low counts, the last test in 2016 came out as 11

I'm feeling really deflated as I've had no luck the NHS, and now even with private consultations I'm getting nowhere

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DaisyBelle

Folate may be good. Was there a range? It's certainly not low but it should be at least half way through the range.

Can't comment on haemoglobin with no range, it would be in range at my surgery and not a problem.

Your Vit D level was dire. If the unit of measurement was nmol/L then 11 is severely deficient. Did you receive any loading doses, supplements or any advice? It really needs retesting now, you can do that with a home fingerprick blood spot test from City Assays (an NHS lab that offers the test to the public).

vitamindtest.org.uk/

Vit D deficiency can cause symptoms:

healthline.com/nutrition/vi...

This disease prevention chart from Grassroots Health, shows the different diseases that may be prevented when Vit D is at the recommended level of 10-150nmol/L

grassrootshealth.net/wp-con...

I take it the antibodies are TPO, the usual limit for those is 34. You can help reduce the antibodies by adopting a strict gluten free diet which has helped many members here. Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks. You don't need to be gluten sensitive or have Coeliac disease for a gluten free diet to help.

Supplementing with selenium l-selenomethionine 200mcg daily can also help reduce the antibodies.

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Sorry I forgot to include the ranges!

For Folate it's >2.9

For haemoglobin it's 115-165

For Red Cells it's 3.8- 5.4

Regarding the vitamin D defiency, at the time I was prescribed the high dose ampoules and that's all.

My concern now is that with my deteriorating symptoms, doctors aren't looking to connect the dots to my inflamed thyroid and multinodular goitre, just because I fall within the typically "normal" range in my thyroid tests.

They're happy to prescribe me chemo based drugs that they have warned me would affect my fertility, my liver, and my lungs, but god forbid they consider the larger picture of my thyroid :(

It's worth mentioning that I have a very strong family history of hypothyroidism, with my three paternal aunties having had theirs removed, and my maternal grandma on lifelong thyroxine.

Is it possible to have hashimoto's with normal thyroid ranges?

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DaisyBelle

Haemoglobin and red cells are well within their ranges so those are OK, Folate is good.

I really think it's worth retesting Vit D. Once you've been diagnosed severely deficient then supplementing is for life. Once back into range most GPs wont do anything else so it's up to us to find our maintenance dose and keep an eye on our levels, buy our own supplements and fund our own testing, unless we have an excellent GP!

Is it possible to have hashimoto's with normal thyroid ranges?

Yes. It just means that the Hashi's hasn't yet destroyed the thyroid but eventually it will. Each antibody attack destroys a bit more of the thyroid until full blown hypothyroidism is the result. I don't think there's a time limit, it can happen more quickly for some people than others. It's very disappointing that a private endo doesn't consider this.

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, wrote an article in Pulse magazine where he said that where there are antibodies present -

"If these are positive – indicative of underlying autoimmune thyroid disease – the patient should be considered to have the mildest form of hypothyroidism.

In the absence of symptoms some would simply recommend annual thyroid function tests until serum TSH is over 10mU/l or symptoms such as tiredness and weight gain develop. But a more pragmatic approach is to recognise that the thyroid failure is likely to become worse and try to nip things in the bud rather than risk loss to follow-up."

You can obtain a copy of the article by emailing Dionne at

tukadmin@thyroiduk.org

and it's in answer to Question 2 that you will find this information.

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Thank you SeasideSusie, that's very informative!

I'm looking for an endo, preferably London based, and was wondering if there any suggestions you or anyone here may have

Regarding the gluten free diet to help reduce the thyroid antibodies, I tried that for a year, and didn't notice any significant changes, so then reverted back to my usual diet.

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DaisyBelle

Gluten free does help the majority of Hashi's patients but some do find it makes no difference.

You can email Dionne, as above, for the list of thyroid friendly endos and see who you can get to, then make a new thread and ask for feedback from members of the forum - replies will have to be by private message as we can't discuss doctors on the open forum.

The only exception to the doctor rule is Dr Durrant-Peatfield who many members have consulted with. He gave up his GMC registration so that he could help people who aren't helped by the restrictions of the NHS. He can no longer prescribe but he advises what to buy and where from. He is based in Surrey, Crawley I think. Ask on the forum for his details if you want to consider seeing him.

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Thank you for your kind advice and guidance SeasideSusie

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You're very welcome DB :)

I do hope you get somewhere. It's very frustrating knowing there is something very wrong but doctors are of no help - been there, done that, still trying to get GP to see that TSH isn't the be all and end all of hypothyroidism :(

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I'm sorry to hear that you've also had to experience the struggle in getting validation with regards to thyroid issues.

I'm still very new to this, but it seems to me that the medical community have a very dated and dismissive attitude towards thyroid patients, with no interest in viewing things through a larger scope.

I've found myself almost wishing for my results to come back as positive, just so that I can finally get some treatment. At the moment I'm just being treated as a medical anomaly, and an experiment.

I hope that you also get the answers and treatment you've been seeking.

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I hope that you also get the answers and treatment you've been seeking.

Oh, I've given up. I do my own thing now :)

I take my Levo prescription, take a smaller dose than prescribed, add some self sourced T3 (because they didn't know anything about T4 to T3 conversion), I self tested all my nutrient levels and sorted out my deficiencies, am addressing adrenal problem. I do my own private thyroid tests. I just have to have an occasional test at the surgery which brings up the argument about suppressed TSH. Depending on which doctor sees the results, it's either thrown at me that I am overmedicated or because the FT4 and FT3 are in range it's accepted.

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That's pretty impressive to be able to self treat such a complicated issue, but also very sad that this is what the medical community have pushed you to do due to their own failings.

My private neuro has agreed to support my request to be referred to an endo on the NHS, which thankfully was accepted by the GP (5 years too late). But I have lost faith in the system, I'm not expecting much of the endo, and unfortunately my insurance have refused to cover it privately as it's a pre exisiting condition.

My worry now is that I've been written off as an autoimmune and inflammatory anomaly, and am being pressured to take such extreme medication for a condition that both my neuro and rheumatologist have admitted they can't diagnose.

I've just had a look at some previous threads, and the issue of steroids causing adrenal fatigue and impacting thyroid function has been highlighted- something I've never been aware of. I'm seriously considering refusing the steroid treatment now.

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Hi DaisyBelle85

Sorry to hear of your problems. I've read through all the great replies you've already had. I agree with all, but would also like to add something.

You mention neuropathy and someone else has mentioned going gluten free to improve your Hashimotos. I wonder if you have any tummy problems at all and even if you don't it may be worth considering asking your GP to test for Coeliac Disease as symptoms can sometimes present in the form of neuropathy.

I have Coeliac Disease, been diagnosed over 40 years and in later years diagnosed with Hypothyroidism, both being auto immune disorders. Through my own research and private treatment, private blood tests etc I discovered I do have Hashimotos and have switched to NDT 18 months ago. Improving gradually. Also had adrenal issues and have been treating with loads of supplements and had a recent saliva test which showed cortisol levels all at reasonable levels. So thankfully it looks like everything has worked. I haven't had neuropathy as a symptom of my Coeliac disease, but it is a small possibility to be considered.

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Hi Georgina1955, thank you for taking the time to respond to my post.

I was on a strict gluten free diet for a whole year, but this was before my neuropathy issues started. I had decided to go gluten free to help with my ibs bloating and discomfort- which to a certain extent it did. However in terms of my overall health, I was still pretty much the same.

I've seen a well respected naturopath who specialises in Thyroid health, and he said I should adopt a carb free, low sugar/high fat diet. I think this would be a keto diet, something I do intent try soon.

You mentioned having adrenal fatigue, was this something that came to light before your hashimoto's diagnosis, or after? I'm just afraid that when I do finally see an endo, because my thyroid function tests are "normal", I'll be fobbed off once again and told I don't have hashimoto's.

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DaisyBelle

I wouldn't go carb 'free' but certainly worth trying low carb and stick to non-starchy carbs which are mostly veg grown above ground (loosely speaking ) and have very much less of the starchy carbs (mostly veg grown below the ground)

I adopted this approach last summer having had 2 consecutive raised blood glucose results and when I asked the GP for help to get it down. One said 'I wouldn't give you meds at this stage' I didn't want meds! Another just said it wasn't that high and not to worry about it. But it was above top of range. I googled and found lots of information including 'The Blood Sugar Diet' book by Dr Michael Mosley. After reading the book a couple of times to absorb it, I started adopting some of the principles in the book. I didn't embark on the diet itself as it's more radical than I would like (800 calories per day for 8 weeks) but just by adopting principles (mostly lowering carbs and raising fats - surprisingly) I have to date lost almost 3 stone of the 4.5 stone I needed to lose. Losing a little bit most weeks and my glucose level has now returned to normal.

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Congratulations on nearing your weight loss target, it takes a lot of dedication and willpower to do so!

I did worry that carb free would be a bit extreme, hence me not finding enough willpower to start lol.

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Just start slowly. If you make small changes, you can get used to them more easily and they become 2nd nature. You don't have to worry about willpower.

First thing I did was to stop snacking between meals which I did every single day. But what I did (which was weird) was take the snacks to work with me and eat them with my lunch. At the end of the first week, I lost 2 pounds :-) Next I adjusted timing of meals, next I started reducing the 'white ' things (bearing in mind some of my white things were gluten free) so less white bread, I cut pasta altogether, less white rice. So if we had a curry, I had just a small spoon of rice but much more curry (with lean meat in)

Later introduced more fats (the good ones obviously)

The one area I guess I'm fortunate in is that I haven't drunk alcohol for nearly 10 years so didn't have to cut drink. I don't drink normal tea or coffee.

As soon as I saw results, it's much easier to carry on.

First thing to do is to remove refined sugar products from your intake and also anything with sweeteners. Just get used to non sweet things.

Probably gluten would be a good thing to give up anyway if you have Hashis. Gluten is quite a harsh substance for the gut to deal with anyway.

Good luck

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Please don't be pressured by the 'establishment'. For years I took steroids for asthma. Finally took more control over my own healthcare and learned a lot from this forum and listening to what other patients had already learned. I'm a retired nurse and just like doctors we don't know everything just because we have more 'official' education than our patients. My asthma was resolved simply and by accident some years ago during an Emergency Room visit for something else. The doctor happened to suggest I try to lessen asthma sx by giving up dairy. For me, this worked, and I was able to get off all asthma meds, including steroids. Have not had an asthma attack since then. Saved me a lot of money too! Years ago, steroids were the first line of defense for asthma and patients were told to start taking them as soon as symptoms appeared. This was such mainstream advice that my doctor always made sure I had a steroid script available to fill if 'needed' without having to call him. Now I'm trying to get my adrenals in shape no thanks to, IMO, years of 'just-in-case' steroids. You're the boss of what medicines go into your body. Stick to your gut feeling and remember all bullies aren't just in the schoolyard, some even practice medicine. Take care. xx irina

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Thank you for your response Irina1975. It's always uplifting to hear such positive stories such as your own.

I definitely am feeling very pressured by my Drs to start such awful treatments, and feel as though it's just some way for them to feel as though they're doing something to treat my condition- even if it's not the right treatment.

I received a copy of the rheumatologist's report that was forwarded to my GP, and was somewhat further disturbed by the fact the she had admitted that:

"She does not have any other abnormal autoimmune serology, aside from the positive ANA and thyroid auto antibodies. Despite her systemic symptoms, she would not fully fit criteria for diagnosis of a specific connective tissue disease, or vasculitis."

My extensive blood work also shows NO inflammatory diseases, so to choose to treat me with medication for advanced Lupus or Rheumatoid Arthritis makes me feel very uneasy.

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PLEASE TAKE CARE OF YOURSELF BY REFUSING TO BE BULLIED! 🐱

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Thank you for your words of encouragement Irina1975. It's all too easy to succomb to the pressure that they're exerting, especially as they are using the argument that this would be a "preventative measure" to stop any further nerve damage.

I find myself worrying that if I don't listen to them, then my condition will worsen and I could end up with a more severe case of nerve damage than I already have.

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By the way I recently started thyroid care under a new endo who is on the same page as we are. One thing he started was loading weekly doses of prescription Vit D as mine was low and out of range. I had been having all over muscle and joint aches and pains for a long time. Today will be my 6th weekly dose of 10 prescribed weeks. After the third weekly dose my aches and pains are gone. See what others more knowledgeable about this have to say here. Worth a try. Chronic pain can wear us down faster than almost anything in my book.

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Sorry for the sarcasm but I believe the main value of this letter is make a paper airplane and shoot it out a window. Preferably in a direction where no one will accidentally pick it up and mistake it for good medical advice!

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With Hashimoto's diagnosed the first thing to consider is your gut and possible food intolerances

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone working

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

Ideally ask GP for coeliac blood test first

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

thyroidpharmacist.com/artic...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

thyroidpharmacist.com/artic...

Low vitamin D, when being improved with vitamin D supplements can aggravate low B vitamins

drgominak.com/sleep/vitamin...

Important to retest vitamin D to see if improved. Really need to look at adding vitamin K2 Mk7 and magnesium too

articles.mercola.com/sites/...

Plus a good daily vitamin B complex may help neuropathy. One with folate in rather than folic acid.

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

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Thank you SlowDragon for your very informative response.

I have been prescribed certain supplements by the naturopath I mentioned in my above response to Georgina1955.

They include:

Liquid Selenium

Vitasorb B12

Magnesium Powder

Polyzyme Forte

Mineral Complex

And Lugol's Iodine 15% taken as two drops in water

I have yet to actually start any of these, and would welcome any feedback from yourself, or anyone who has any experiences or knowledge in this regard.

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Absolutely NOT recommended to take iodine when have Hashimoto's

drknews.com/iodine-and-hash...

thyroidpharmacist.com/artic...

Only start one supplement at a time and wait at least a fortnight to asses any change before adding another

Magnesium, B12 and selenium - many of us supplement these.

You absolutely must test vitamin D

hypothyroidmom.com/92-of-ha...

Vitamindtest.org.uk £29 postal kit

Don't know the last two

What's in the mineral complex?

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I've just taken a look online, and this is what the manufacturer has described:

Provides magnesium, zinc, manganese, silicon, copper, chromium, molybdenum and selenium in a convenient capsule form.These minerals can help to support bone health, energy production, red blood cell formation, immunity and other metabolic processes.

The polyzyme forte is as follows:

IngredientAmountProviding% EC RDA

Bromelain153mg(providing 3600 gelatin digesting units (GDU's))

Lipase39mg(providing 2100 lipase units (LU's))

Protease18mg(providing 50.4 casein protease units (CPU's))

Amylase15mg(providing 9000 amylase units (AU's))

Cellulase13.5mg(providing 90 cellulase units (CU's))

Lactase9mg(providing 1950 lactase units)

Lactobacillus acidophilus9mg(providing approx 630 million cells)

Maltase4.5mg(providing 3.6 amyloglucosidase units (AGU's))

Sucrase3mg(providing 450 invertase units (IU's))

Ingredients:

Potato Maltodextrin, Capsule Shell (Hydroxypropyl methylcellulose), Bromelain,, Bulking Agent (Cellulose), Lipase, Protease, Amylase, Cellulase,, Anti-caking Agent (Magnesium Stearate), Lactase, Lactobacillus, acidophilus, Maltase, Sucrase.

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"Convenient' sounds like a marketing word more that good health advice.

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Good Lord! Sounds like the ingredient s label of a particularly unhealthful processed food! 😕

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If I were you, I wouldn't take copper without getting it tested first. Hypos are very often high in copper and low in zinc. So, you don't want to add in any more copper.

I've been reading through all these excellent responses, here, and I would like to add that, yes! Being hypo can most definitely cause neuropathy. My neuro told me that. Because of lack of T3, the nerve endings die off. And no nerve endings does not mean no pain, because the brain interprets lack of sensation as pain.

Your T3 might not look deficient in those labs, but remember you have Hashi's, and with Hashi's levels can jump around. So, although you weren't hypo on the day of that test, you could have very well been the week before, or the week after, a blood test is just a snap-shot in time. Just because you're wearing a party hat in your birthday photo, doesn't mean you wear it all the time! If you see what I mean. :) So, your doctors are being very short-sighted - not to say ignorant - and personally, I wouldn't take anything they recommend!

The iodine skin patch test was debunked a long time ago. Pity doctors are so behind the times. But, what exactly did your doctor think that iodine would do for you? It's not a magic bullet to make your thyroid work better. It's just one of the ingredients of thyroid hormone. But, if you're not making enough thyroid hormone, it's not due to lack of ingredients, it's due to lack of thyroid tissue, because of the Hashi's attacks. So, iodine is not going to do anything helpful. And could make you a hell of a lot worse.

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Thank you for your input greygoose.

I've been doing a lot research online, and have viewed countless accounts from patients with Hashi's that suffer with pretty much the exact same form of neuropathy and pain that I'm currently dealing with. What leaves me baffled and hopeless, is when I'm dismissed by my Drs who are a professor and consultant respectively. It leaves me feeling as though I have some sort of mystery, untreatable illness, that will strike again should I not follow their advice.

I have noticed that I tend to get worse when I'm tired or fighting a viral infection. It's become a daily occurance for the pin prick like sensations to suddenly start intensifying at around 8pm, which is when I get really tired and ready to rest. I find that sleeping long hours helps reset things in some way, it's almost as though it's my body's way of letting me know just how much rest I need. I don't know if anyone else has a similar experience.

Regarding the iodine skin patch test, I did think it a bit dated, and didn't consider doing it.

I've contacted my dr and informed her that due to me currently fighting off a nasty cold, I don't think it best to ahead with the steroid treatment plan. Her response was that if it's a mild cold, it shouldn't be a problem- i clearly have a very weak immune system, and am in bed at least 2 weeks a month from various colds etc. How she thinks further weakening my immune system with steriods whilst I'm viral is ok, is completely beyond me 😠

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I think that one of the problems, these days, is that doctors just don't learn about symptoms. They have no idea of all the symptoms hypo can cause - over 300 of them! You're lucky if you can find a doctor who knows one or two!

I honestly don't think your doctor has any idea what she's doing. She could make you so much worse. But, one of the hardest things for a hypo is standing up to someone who's telling you the wrong thing - even when you know for certain it's the wrong thing! We totally lack self-confidence. And there they are, in their white coats, badge of superiority, and their x number of years in med school, totally unaware that a lot of what they learnt is wrong, but totally convince of their authority. I think they know how hard it is for us, and that they can get away with murder - and then blame us for it! But, when we know what we're talking about, we should have the courage of our convictions, and learn to say no. No, I'm not doing that. I believe it to be wrong.

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I am not that informed about supplements. (I would ask Seaside Susie and others about your list.) But 2 things jump out at me. One, the mineral complex. I am leary of 'complexes' as sometimes they may include something we don't need (I'm thinking maybe calcium)-also the ratios might be off . So I feel comfortable taking meds/supplements individually. And two, I would want his/her rationale for the Lugol's solution. Also, a caveat. You didn't say but is the doc recommending supplements that he/she sells? This is always a red flag to me. Just my opinion.

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The doctor recommended I buy these from the Natural Dispensary online, and doesn't sell them himself.

The rationale behind the iodine, was for me to take the iodine if an iodine skin patch test showed that I was deficient. I did have my misgivings about the accuracy of such a test, and is one of the reasons why I have not yet done it.

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skip the patch test and don't fall for scare tactics like "your condition might worsen if you don't do as I say." Just my opinion.

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That's an interesting one Irina. I have a friend who has been taking Metavive for a few months on the advice of a private doctor (I have seen same doctor previously) and I feel sure this particular has a vested interest in prescribing Metavive for various reasons. When she asked him on one occasion if she could switch to NDT, he replied that Metavive IS NDT and said it was the cheapest on the market. But Metavive is marketed as a food supplement and does have glandular tissue in it, but is not the same as conventional NDT. His constant replies about Metavive convince me he has an interest in keeping people buying this product.

Had I not already been on conventional NDT (Erfa) when I first saw him, no doubt he would have told me to purchase Metavive as well!

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You bring up an interesting point. In an earlier reply today to DaisyBelle I asked if the supplements her doc recommended were ones he was selling. She said no, he had recommended she get then online but my cynical mind wonders who knows where endorsement profits for recommendations might be coming from??? Silent parners???

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Yes that's why I replied mentioning the Metavive because of what you'd said about it being a red flag if a doctor promotes something they have a vested interest in.

The doctor I've referred to worked some time ago in New Zealand and I believe Metavive is sourced from there

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Just re-read your post. "Improving Vit D levels can aggravate B12 sx." I didn't know this but this is happening to me. I wrote a post about really pushing for B12 injections as my sx are horrible right now. This, I just realized came on the heels of my improvements from my weekly Vit D. Thanks. More new info for my 'thyroid info arsenal.'

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Yes I always had above range B12 (never had taken any B vitamins) I always thought it odd as I have Hashimoto's.

Anyway, started Vitamin D supplements for longstanding vitamin D deficiency. About month after, started getting peripheral neuropathy and dizzy. Found Dr Gominack's article.

Started good vitamin B complex and B12 sublingual lozenges as well. Peripheral neuropathy disappeared pretty quickly

More on my profile

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Will read as this is exactly my current situation. Am seeing my new endo June 6th with pre-visit labs tomorrow am. Since my B12 was 'in range" tho in my opinion not optimal for me, he didn't suggest supplements. I am ready to do battle for a B12 injection script. Can give my own shots and monitor sx-just need the Rx. He believes in listening and working with his patients so I think this will go well. Take care. irina

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Me again. I also think I have been B12 deficient for quite a while. I believe the reason my B12 was in range is only a fluke as labs were drawn after I had been eating weekly liver for a couple of months to raise ferritin. The level, IMO, looked good on paper but isn't good enough to alleviate sx. Have alsoordered Thorne B complex. Hope it gets here soon.

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Take B vitamins in morning. Can make you feel a bit wired the first few days or give niacin flush

I tried quite a few, ended up with Igennus Super B complex. Now just one per day (half recommended dose)

Sublingual B12 may be as good as injections

aafp.org/afp/2003/0301/p979...

B12 generally

drjockers.com/warning-signs...

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Thanks Will follow, If I can't get the injection will up the sublinguals I'm already taking. And will take B's in am. I space my Vit/supps out depending on thyroid med times and food eaten. I follow Dr Jockers. I think he is something of a character. Marches to his own drummer. My kind ofperson! 🐱 And thanks for the tip re niacin flush. Completely forgot about that.

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Also when supplementing vitamin B12 it's recommended on here to supplement a good vitamin B complex. We are often low in other B vitamins, especially thiamine and/or B5

Especially if also supplementing to improve low vitamin D

drgominak.com/sleep/vitamin...

A good quality B complex, one with folate in.

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

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