Struggling with Hashimoto's. Desperately need a... - Thyroid UK

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Struggling with Hashimoto's. Desperately need advice

rilec profile image
12 Replies

Hi everyone, I posted 6 weeks ago about my blood test results. I was told I have Hashimoto's, but as of now my other levels are within "normal" ranges (low normal, though.)

My results were:

Thyroid Peroxidase: 279 (<=36)

TSH: 1.979 (0.35-6)

Free T4: .69 (.6-2.4)

Free T3: 3.61 (2.39-6.79)

The doctor did not want to medicate me because my levels were not obviously abnormal. She suggested modifying my diet for 3 months and retesting. I have been gluten free for about 6 weeks, and so far I feel no different. That's why I'm writing actually. I feel I am very symptomatic. My energy is low, I have almost crippling brain fog, and worst of all I am so sensitive to cold that it's driving me nuts. At night especially my legs feel freezing cold no matter what I do, no matter how many blankets I pile on it always feels like there is a cold draft on my legs. If I do manage to finally fall asleep, because of all the blankets I wake up in a gross uncomfortable sweat. It is really impacting my life. I have tried everything, blankets, warm showers, space heaters (usually helps me fall asleep but then I wake up covered in sweat), electric blanket (doesn't block the "draft" feeling), etc. It is not anything to do with my house or bed, since I feel the same way in different houses. I am so sleep deprived, I think because of the cold sensitivity but I tend to have trouble sleeping as it is anyway. This has been going on for almost 3 years now and I really feel at my wit's end.

I have added into my diet a vitamin D supplement (my D was low 6 weeks ago, too) and I also started Selenium a few days ago to see if it will help. I have been taking Ashwagandha and Holy Basil for a few years now, I was taking them to help with sleep and only recently was told by my doctor that just so happen to help thyroid too. Apparently they haven't been helping enough though...

I'm not sure where to turn. I can post the rest of my blood results too if you think that would help? Some other levels were a bit strange (i.e., I had normal iron but very low ferritin). Thank you!

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rilec
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12 Replies
Peanut31 profile image
Peanut31

Hi rilec

I have Hashimoto’s too, and my Endocrinologist has refused to treat me, your symptoms are just like mine, especially the freezing cold feeling.

I’m off out in a minute, but I will definitely reply when I’m back.

Remember you are not alone in this, the people on here have helped me no end.

Speak soon

Peanut31.

Saggyuk profile image
Saggyuk

Hi Relic

Yes, post all the results you can :-)

In regards to the gluten free diet, it took me a few months to feel better, although my stomach and few minor thing improved quite quickly. Thyroid and other took longer.

If you have a problem with gluten - it's needs to be 100% gluten free and continuous so have you read up on cross contamination and excluded it properly. Eating it once a week can keep you ill. Have you changed your toaster for example?

In regards to holy basil and ashwhaganda - this are often taken for adrenal - have you had your cortisol tested? Have you tested blood sugar levels? I can't tolerate ashwhaganda myself and you should always check side effects to see if apply to you - for example, there are cautions with thyroid, some autoimmune conditons and low blood sugar levels.

Do you eat enough calories each day? Do you have a well balanced diet to ensure you're not missing anything?

You need B12 and folate tested too :-)

SlowDragon profile image
SlowDragonAdministrator

Can you add your ferritin and iron results

Low ferritin can affect thyroid

Also suggest you get B12 and folate tested. These are often too low as well

Are you also trying strictly dairy free as well.

Presumably you have seen the main Hashimoto's websites

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

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

chriskresser.com/the-gluten...

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

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

thyroidpharmacist.com/artic...

Hi rilec Sorry to hear this Are you taking any pain killers for example opiates, co codamol, codeine etc.

rilec profile image
rilec in reply to applesandoranges21

Hi applesandoranges, absolutely not, and I'm very thankful those have never been medications I've had to consider

rilec profile image
rilec

Here are the rest of the results from my fasting blood test, with ranges. This was done 6 weeks ago with the thyroid test.

Blood Sugar 66 (65-110)

Urea Nitrogen Blood (BUN) 11 (6-24)

Creatine, Blood .64 (.6-1.4)

Bun/Creat 17.2 (5-26)

Sodium 140 (135-148)

Potassium 4.4 (3.5-5.0)

Chlorides 107 (98-108)

Alk Phosphatase 57 (35-115)

Carbon Dioxide 25.5 (21-31)

Calcium 9.1 (8.3-11)

Sgot/ast 14 (7-48)

Total Protein 6.3 (6-8.5)

Albumin 4.2 (3.3-5.2)

Total Bilirubin 1.85 (.2-1.2) (This always shows up slightly high, and I was told several years ago that it probably just means I have Gilbert's syndrome)

Sgpt/alt 9 (7-48)

eGFR - African American 140.1 (>60)

eGRF Non-African American 115.8 (>60)

WBC 5.6 (4-10)

RBC 4.85 (4.1-5.4)

Hemoglobin 14.9 (12.1-15.1)

Hematocrit 42.1 (82-99)

MCV 86.8 (82-99)

MCH 30.8 (27-33)

MCHC 35.5 (32-36)

RDW 12.6 (11.5-14.5)

MPV 9.5 (7.4-10.4)

Platelet Count 222 (130-400)

Polys 58.6 (40-75)

Eosinophil 1.8 (0-6)

Basophil .5 (0-5)

Lymphocye 33.4 (18-47)

Monocyte 5.7 (0-12)

Absolute Neutrophil Count 3.3 (1.8-7.7)

SED Rate (Westergren Method) 2 (0-15)

H. Pylori IGG Negative

Cholesterol 143 (134-180)

Triglycerides 49 (30-150)

HDL 70 (>=40)

LDL Calculated 63.2 (30-140)

VLDL (Calculated Value) 9.8 (0-40)

Chol/HDL (Calculated) 2

Ferritin 12.3 (11-307)

Phosphorus 2.9 (2.5-4.5)

Iron Serum 115 (55-165)

Magnesium 1.78 (1.7-2.8) (I've also just begun supplementing this again)

Vitamin B12 324 (180-914)

Folate 14.92 (5.21-40)

Vitamin D, 25 Hydroxy 19.68 (30-100) (Supplementing this now too)

Jazzw profile image
Jazzw in reply to rilec

Your Vit D was very low - how much are you supplementing?

rilec profile image
rilec in reply to Jazzw

The dr said to do 5,000 IU / day

Saggyuk profile image
Saggyuk in reply to rilec

Hi Rilec

I think I would disagree with doc, serum iron is not always reliable but low ferritin is pretty much always indicative of low iron stores or Iron Deficiency Without Anaemia. My endo would always treat me for iron deficiency with that - whether I had indications of anaemia or not. I would take ferrous sulphate 200mg or ferrous fumerate 210mg once or twice a day for 2-3 months and then retest - you need to retest to ensure that you are no longer deficient with a more optimal level over 70 and because you don't want to keep supplementing iron as too much is as bad as too little. Ferrous fumerate is a little easier on the stomach but take with vitamin c to increase absorption and help with the tummy. Make sure you take these four hours away from any meds.

livestrong.com/article/3479...

ncbi.nlm.nih.gov/pubmed/286...

Basically, you're likely to become anaemic in the coming months and it's best to resolve now.

Because of the issues with your legs and the fact that many people are deficient with B12 that low and your level is far from optimal - for example, in Japan, they consider anyone under 500 as deficient as it has become clear that these ranges are out of date and that tests are not 100% accurate. B12 is water soluble meaning that any excess your body doesn't need is basically peed out. Here's a list of B12 symptoms so if you have any of these so you can't overdose on B12 so I would take a high dose methylcobalamin for a few months and retest. You should get a good b complex too.

Yes Vit D was awfully deficient so you would have been feeling awful, I get many leg pains and a fast heartrate plus other when under 40. Yes do check the dose you have been given as many docs just prescribe 800iu - not in line with the guidelines and this won't help any where near enough.

simplysupplements.co.uk/hea...

Do you eat enough, are there likely to be other deficiencies or wholes in your diet - such as vegetarian/vegan or not eating fruit and veg?

Hopefully you'll start to feel better soon :-)

Clutter profile image
Clutter

Rilec,

My legs and feet used to feel as if they were burning cold if that makes any sense and I felt a dreadful draft on my legs even though the duvet completely covered them. I found it handy to have a hot water bottle inside a single duvet wrapped around my lower legs and feet underneath the main duvet. I had another hot water bottle on my torso and would feel warm enough without feeling hot. I didn't sweat at all at that time.

Read Dr. Toft's comments about the pragmatism of treating positive antibodies in Guidelines for the Use of thyroid Function Tests thyroiduk.org.uk/tuk/about_... Email dionne.fulcher@thyroiduk.org if you would like a copy of the Pulse article to show your GP.

There is no cure for Hashimoto's which causes 90% of hypothyroidism. Levothyroxine treatment is for the low thyroid levels it eventually causes. Many people have found that 100% gluten-free diet is helpful in reducing Hashi flares, symptoms and eventually antibodies.

chriskresser.com/the-gluten...

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

Peanut31 profile image
Peanut31

Hi rilec

I see others have offered you good advice.

Gluten free definitely helped me.

At first I replaced bread, cakes, biscuits with gluten free ones, but now I try and stick to fresh wholesome foods, I eat homemade soups, salad, chicken, stir fry’s.

I have also given up on milk as well as I’ve shown an intolerance to it.

I take vitamin D, C, iron tablets, magnesium, B12 and selenium.

Selenium really helps.

It takes time to start feeling better, but it will work.

I’m still freezing cold though and I have other symptoms.

I’m hoping when I start self medicating this may help.

Best wishes

Peanut31

Cooper27 profile image
Cooper27

I'm working through Izabella Wentz thyroid protocol just now, although I've heard her route cause book is also pretty helpful. They could be worth reading.

I had a very low gluten diet before, as my partner has coeliac disease. I've been completely gluten free for 3 months now, and also not noticed much improvement. Izabella's books advise that around 80-90% of people improve on a gluten free diet, while 70% need to cut out dairy, many more need to cut out soya. Even 14% should avoid grains. It could be you need to cut out other food groups too.

You'll also need to work on healing your gut - the lining will be damaged from whatever food group it is you shouldn't be eating. That means toxins are leaking through your gut lining, and making you feel miserable too.

It's not simple to heal from Hashim Otis, but putting in the leg work now will pay dividends in future!

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