Follow up Ultrasound visit! Frustrated!! - Thyroid UK

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Follow up Ultrasound visit! Frustrated!!

rjerome812 profile image
34 Replies

Well, I went back this morning, the doctor looked at the ultrasound and didn't deny there was an issue with my thyroid, but because my tsh , went down from last time, he said that was normal range. The result was an idione deficiency with diffuse epidemic goiter. He then said see you in 3 months to redo labs. So more months of fatigue and feeling like crap. He even wanted to send me to a dietitian and asked if I work out. That really frustrated me, since I have been working out the last 3 months and have gained not lost. I also cut out red meat and dairy because my cholesterol was 225. Its funny I have gained 30 lbs just in the last 8 months, but I eat even better than before and they still say maybe it's your calories or exercise. I just want to scream! Part of me was like, I need to look for anther Doctor again and part of me was I want to try the compounding pharmacies, where maybe I can get the T3 and T4 to finally feel like a person. Oh, he also wants me to do a sleep study! Has anyone had a doctor suggest that.?

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Clutter profile image
Clutter

rjerome812,

How was your iodine deficiency diagnosed and what is your doctor doing about it?

rjerome812 profile image
rjerome812 in reply to Clutter

I guess through ultasound, Hes not doing anything but doing blood work again. He said its probably just the beginning of Hasimotos

Clutter profile image
Clutter in reply to rjerome812

Rjerome812,

I think iodine deficiency is diagnosed via urine tests. Hashimoto's can be diagnosed by ultrasound if typical Hashimoto's damage is seen but more commonly it is diagnosed by thyroid peroxidase and thyroglobulin antibody tests.

rjerome812 profile image
rjerome812 in reply to Clutter

I did have high antibodies TPO, But Tsh in Normal range. The ultrasound was Heterogeneous , so that shows abnormal.

Clutter profile image
Clutter in reply to rjerome812

Rjermone812,

There is no cure for Hashimoto's which causes 90% of hypothyroidism. Treatment is for the low thyroid levels it 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_...

rjerome812 profile image
rjerome812 in reply to Clutter

Thank you, I was just thinking of what I can eat to help myself. I wish I could stop gaining. I dont even eat fast food and it seems I keep gaining. So im doing something wrong.

Clutter profile image
Clutter in reply to rjerome812

Rjerome812,

Don't blame yourself. Symptoms, including weight gain, can precede abnormal TSH by months/years. If TPO is high it will destroy your thyroid gland causing hypothyroidism eventually so it would be pragmatic to start you on Levothyroxine if TSH is high in range.

rjerome812 profile image
rjerome812 in reply to Clutter

Can you treat it yourself, Can I just buy T3 and T4, or does everything need a Rx

Clutter profile image
Clutter in reply to rjerome812

rJerome812,

T4 and T3 are prescription only in the USA but you can order online without prescription from Greece and Turkey. If you self medicate you will have to order your own labs to guide your dosing.

I really recommend you try to persuade your endo to prescribe.

rjerome812 profile image
rjerome812 in reply to Clutter

Okay, Thank you for the info

Ruthi profile image
Ruthi in reply to rjerome812

Lots of people manage to lose weight, and feel better (but not be cured) on a very low carb/high fat diet.

I have been eating this way for 7 months now. Lost weight (BMI 24 now!) and I feel heaps better, even though I was optimally medicated before I started. Its not the easiest thing to convert to but is second nature now. And at least you can eat steak!

in reply to rjerome812

Hi rjerome - try low carb, high protein diet but rely on cottage cheese

chicken eggs, fish rather than red meat as it might affect your kidneys. The diet should be a short term aid to boosting your metabolism but is successful if you cut out most starch and carbs

allowing yourself enough carbs to keep your muscle function

going . If you are hypothyroid it may take 3 weeks to see a couple

of pounds go off, but when you see the weight suddenly go down

it will help you go on the diet. As you know green vegetables cabbage broccoli runner beans rather than root vegetables have low

carbs. Avoid some plain biscuits as they may have added sugar

check the packets as some packs are deceptive. You can allow

yourself at least one apple or orange along with at least a quarter

of a pint of milk a day. MD Gundry has an interesting video on

his berry diet with black currants, blue berries, raspberries bilberries

- but damson plums and apples have the polysterols which accelerate metabolism.

To top up iodine find it in natural foods such as milk natural yoghurts

including low fat ones. Vitamin B12 supplements help.

Iodine is meant to synthesise the production of t3 and 4 in the thyroid

but if you have an autoimmune system, your thyroid might not

be functioning correctly.

momo33 profile image
momo33

I was also told my thyroid ultrasound was 'normal' but have high tpo antibodies, like you. My doctor started me on levo when my TSH was just over 5. I agree with Rjerome812, he should start you on levothyroxine now. I am going to my doctor to fight for a dosage increase next week, because I too have been gaining weight, even on levo. It is so horrible, I am a size 22 now and there is no way I eat enough to put on so much weight. It's like walking around in a body that just won't cooperate. It is awful- I get how you feel, I really do. You should press to go on medication now, but perhaps like me you can work on trying not to blame yourself for weight gain and be kind to yourself. It's not your fault, it's the hashi's. Please try not to feel bad- I am trying too! Thinking of you and best wishes.

rjerome812 profile image
rjerome812 in reply to momo33

Thank you

momo33 profile image
momo33 in reply to rjerome812

I hope you get the medication you need and you feel better soon.

greygoose profile image
greygoose

Cholesterol has little to do with what you eat. It's made in the liver. If you eat a lot of cholesterol, the liver makes less. If you don't eat cholesterol, the liver makes more. But, high cholesterol is a hypo symptom.

Doctors just cannot get it that hypos put on weight through no fault of their own. And low-calorie diets and exercise are likely to make things worse, not better. But, they're all the same! It's a universal problem.

If you have Hashi's, you do not want to take iodine. It would probably make things worse. :)

rjerome812 profile image
rjerome812 in reply to greygoose

Thank you, everyone has been awesome with the information. I am suppose to repeat my labs in July. So i think I will do them early in the morning instead at noon, like the last TSH test.

greygoose profile image
greygoose in reply to rjerome812

Well, you'll certainly get a higher TSH. :)

momo33 profile image
momo33 in reply to greygoose

I didn't know that, greygoose! That makes me feel better, as the calorie counting was not working for me. I went on a diet and honestly, I felt no difference whatsoever-it was dispiriting, really. My cholestrol is higher than it should be- going back to my doctor soon to ask for a dosage increase! As always, great advice!

greygoose profile image
greygoose in reply to momo33

Thank you, momo. :)

tgirlnc profile image
tgirlnc

If you haven't had a full blood work-up including Free T3, FreeT4, reverse T3..along with antibodies test..then you should not self medicate. You can tell nothing from TSH...even if your FT3 and FT4 are in range, but low..you can feel awful, gain weight..have all the symptoms. If you find a good doctor, they will still potentially medicate-however, I have several friends who were in low range and brought levels up through diet changes and supplements. Go get new labs now with a full panel and don't wait..it's better to have a complete baseline than wait it out feeling terrible.

LynneG profile image
LynneG

Sorry for your situation. Everything about doctor's is frustrating, so I feel for you.

Saying that though (unless he has a motive and is just trying to recruit!) a sleep study sounds a good idea. I wish someone would suggest a sleep study for me. We sleep to repair and renew, if there is something disrupting your circadian rhythms, melatonin production then this can be crucial to health. Also timing of hormone production - if cortisol or even adrenalin is being produced /timing off, waking you up at 3am etc. So maybe he is thinking along the lines of adrenal issues or even adrenal exhaustion/HPA axis, as to why feeling so exhausted in the day. All connected to thyroid health. Did you not ask him why?

I wouldn't worry about your cholesterol level. Believe it or not (considering all the hype over the last 40 yrs! ) we need a good healthy level of cholesterol. Our body needs cholesterol to make our hormones. If you are worried that your body is finding it difficult to regulate your thyroid hormone production, the last thing you need to do is mess with/lower your cholesterol. I am no doctor but 225 seems fine to me. Also total cholesterol means zilch, you need to know your HDL/LDL ratio when being tested. For no other reason than it is interesting. Your body makes it's own cholesterol. If you eat less cholesterol containing foods, your body will just make more cholesterol. It makes what it needs! If you are ill then you will need more cholesterol and so your body will switch up a gear to produce more cholesterol. You seem to be making yourself unhappy focusing on your cholesterol for no reason.

Now Triglyceride levels are a different case. Prob most important to keep them at a reasonable level. What puts triglycerides up in blood? and in accumulation of fat around middle and organs? Eating too many carbs. Excess carbs equals high sugar, sugar in blood has to be regulated so insulin quickly grabs it out of the blood, where if too high is dangerous and gets it to the liver, where the liver converts the sugar/glucose to fat to enable the body to store it. It is a metabolic pathway that we can do nothing about, we evolved to survive famines and so our body will store excess sugar as fat.

Cut out any refined carbohydrates that get digested immediately to sugar and cause sugar spikes and insulin production. So thats processed foods and flour products like bread, pasta, rice. Eat your red meat as long as it's healthily produced, free range and organic without growth hormones and antibiotics. Eat lots of healthy fats like coconut oil, butter from grass fed cows, eggs, hard fat cheese /brie for vitamin K2 ,avocados. Fat will keep you full and switch on hormones such as grehlin (the I am full hormone) and lots veg and fruit. Just no carbs other carbs such as fruit and veg. Potatoes and starchy veg can be eaten as long as don't eat the bread/pasta/ rice/ pastries etc. You will not store fat that you eat if you dont eat the refined carbs. Also don't eat/cook with veg oils. Olive oil is ok (don't cook with tho) They just knacker your liver and give you fatty liver along with hi carbs. Remember refined carbs even wholemeal bread are converted to fat in your liver. Natural fat from butter, coconut oil and unmessed with by man, natural foods.

Sorry, sounds like a lecture, you probably know all this - but you seemed worried about cholesterol, so I thought not. Look at Dr Mercola's web site re triglycerides what causes. google Dave Asprey. And watch this Ivor Cummins video - he shows you what you eat and what i does to blood markers in this video- so basically proof. However we are all a little different. youtube.com/watch?v=UZoQiDa...

Megluka profile image
Megluka

Oh yes...the sleep study. When I nearly crashed the car three times in one journey because I fell asleep at the wheel my GP wanted to send me for sleep apnoea studies.

rjerome812 profile image
rjerome812 in reply to Megluka

cholesterol is a little high, but what concerns me is my bad cholesterol is high and good cholesterol is low. Thats why im trying to get it under control, not sure if its years of low carb diets or just my genetics. It seems it went up 25 points in 5 months.

LynneG profile image
LynneG in reply to rjerome812

Cholesterol is not static. I alters all the time. If you need more, your body will make more. Perhaps it was raised due to time of day. Or may be needed more if you were ill or under threat. LDL (your so called bad cholesterol) is also is part of your immune system function. If your body feels it is under attack from infection, it will keep some in the blood instead of depositing in the cells. ready to defend from infection. So your test is reading what is in the blood. Your body will also make more LDL in such circumstances.

Also thyroid hormone is responsible for making or messaging the body to build LDL receptors on cells. Cholesterol is transported by LDL to the receptors to enter the cell. If you do not have enough thyroid hormone, your LDL receptors aren't effectively going to get built. So if not enough receptors, then LDL will hang around in your blood.

So priority is sort your thyroid issues out.

Also try and raise your HDL. I believe coconut oil boosts HDL production and good natural healthy fats raise HDL. Omega 3's and fish and avocados But google and find out for sure.

LynneG profile image
LynneG in reply to LynneG

Did you know that there is not one molecule of fat in cholesterol. Cholesterol is not fat and is made up of no fat. So reducing fat intake will not reduce cholesterol :)

Fat in the blood is transported from the liver by the blood which has been made from excess glucose from carbs. This is saturated fat because that is the only type of fat the body makes and obviously will be found in the blood as it is transported from the liver to be laid down as fat stores. Not the saturated fat that you have eaten unless you have eaten excess carbs, which is doubtful as you say you are lowcarb. look at what your triglyceride levels are

rjerome812 profile image
rjerome812 in reply to LynneG

Well they will not give me anything yet for thyroid. The doctor says it's still in Normal Range, Just antibodies, and Thyroid Ultrasound show signs of Hashi's. He isn't looking at weight, cholesterol or family history. I'm hoping in the next couple months it shows in T4 and Tsh so he will finally give me something.

LynneG profile image
LynneG in reply to rjerome812

Ok, my TSH is climbing. 3.53 last test early this yr. Obv doctor ignores. But I have hypo symptoms. My TSH thyroid stimulating hormone is high because it senses not enough thyroid hormone so telling body to get some made. No matter what the doctor thinks! Chris Kresser - look at his articles on thyroid and get really informed. He and all other functional nutritional docs/clinicians think that TSH should not be above 1 if it is you have an issue with your thyroid. Definitely not higher than TSH of 2.

Ultrasound shows evidence of Hashi's! then you have Hashis.

I listened to the Thyroid summit a few months ago. cutting edge docs being interviewed. It was broadcast for free for limited period but now can buy. I can afford to buy, if I was you, I would buy. So much information. Isabella Wentz, The Thyroid Secret. She states that Thyroid antibodies need normally to be no more than 1. That's 1, no normal range of up to 30+ 115+ whatever. We only need antibodies to our own tissue to instruct cell death so new cells can be made (constant renewal and repair of cells happens) but we only need a level of 1. anymore and you have antibodies against your thyroid attacking it and killing it off.

Yo are waiting for enough of your thyroid to be destroyed because of someone who thinks they know what they are doing!

You are in the US right?

Change your doctor!

You can obtain prob from Isabella Wentz site a list of doctors/clinicians functionally trained and some will have thyroid specialisms state by state. You are lucky in the US. Find one and go to see. But first buy The Thyroid Secret videos and learn.

Isabella Wentz had Thyroid issues herself as a teenager and newly married 20yrs + ruining her life. So as a pharmacist set to change things.

You are waiting for your doctor and meds. Meds are not necessarily the answer for Hashis. You can lower and get rid of antibodies and so the attack with nutrition and specific nutritional supplements and lifestyle.

If no joy with docs in your state/town Dr Amy Myers - another functional doctor (again US) Had a thyroidectomy unfortunately as she sees it - has so many patients, has so much innovative treatment and understanding of the issues. Has just written a book 2017 on the subject of thyroid and autoimmunity. Provides approved thyroid doc lists on her website no doubt.

Listen to both there are bound to be you tube videos.

And Chris Kressers informative article series on the Thyroid :)

thyroidpharmacist.com/artic...

LynneG profile image
LynneG in reply to LynneG

Dr Amy Myers

youtube.com/watch?v=igFo7Cc...

rjerome812 profile image
rjerome812 in reply to LynneG

Its funny, last April I had a partial hysterectomy. I actually was feeling pretty good for about 4 months after surgery, then my estrogen shot up to 730 and my progesterone was only at 7( not sure if it was mg.) I also have family members who have thyroid disease, Mom , grandma, and uncles. But they told me my estrogen will always be up and down, but never said to take any hormones and didnt retest at my last visit. It seems everything had gotten worse after my Hysterectomy. Its been over a year, so I would think if it was just a balancing issue, I would feel better. So I wonder if it will clear up or if I will be like my mother and develop hypothyroidism.

LynneG profile image
LynneG in reply to rjerome812

I wouldn't wait for it to clear up. I would follow a functional doctor's protocol like Dr Amy Myers or others I mentioned. Chris Kresser free Thyroid article series on thyroid. Follow their diet guidelines/activity advice. Your gym working out could be causing fatigue and problem making thyroid hormone. But you have hashi's as you state - so need to follow some protocol. Perhaps Isabella Wentz - she had hashimotos.

Certainly didn't ought to eat gluten as immune system sees gluten proteins that get through tight junctions of intestines and are similar make up to thyroid tissue so will get thyroid being attacked - molecular mimicry. I would adopt some protocol that lowers thyroid antibodies and keep testing ev 6 months to see if what you are doing is working and each test shows a steady reduction of antibodies

LynneG profile image
LynneG in reply to rjerome812

Sorry, I posted the wrong Ivor Cummins video that shows blood marker results and data. This is the one to watch for youtube.com/watch?v=fuj6nxC...

I can sympathise with you entirely. If you have iodine deficiency research has shown from

The British Thyroid Association, that lack of iodine can cause goitre. It can also lead to

problems with breast tissue, and even cancer in women. You can read all about it on

the BTA website under iodine deficiency. Dr Myhill.co.uk explains how iodine was spotted

over two hundred years ago. Iodised salt has been on the menu since the 1920's in |Moretons

salt. Cerebos iodised salt can be found on line in Sainsburys and Waitrose.

Having recently discovered the benefits of iodine, I have been eating fish and fish paste,

and natural yoghurt which contains iodine. However some GPs may give you an iodine supplement which might reduce your goitre. In the states they give people Ioderal ? on prescription. The fatigue you feel might be symptomatic of a hyperthyroid. I have never

been to an endocrinologist, but depending on where you live, you might be able to see

a consultant in Guys St Thomas and George Hospital in Roehampton which you can find

under nhs choices under endocrine disorders and metabolic disorders.

Having read several articles some say that the dose of a supplement must be low or

you could have a sensitive reaction. Too much can cause problems with the thyroid.

Surgery is advised if you have difficulty in swallowing - say for a partial thyroidenctomy.

I am plodding on with finding iodine in food to increase my levels.

As for diet low carbs but too high fat diet such as large quantities of coconut may add pounds

to your waistline. Low carbs with as much green veg broccoli green beans, the water veg rather

than peas and root veg, combined with protein such as fish meat cottage cheese eggs and an oz a day of hard cheese along with a quarter of a pint of milk, and an orange and an apple, can

give a rough guide to increase your metabolism and lose weight.

High doses of vitamin c 1000grams a day can help your adrenals. Vitamin B12 is recommended

to boost energy. Vegensafe is useful as it is in droplets - one small bottle should last you

at least five months. They also do a nascent iodine which you might find helpful as it is bioactive.

Unfortunately you now have to pay a customs import tax on stuff from the USA, which may

add up to more than the products you purchase on line with international postage included

of hard cheese,

Your thyroid hormone balance might be near normal just underactive which can still affect your

health.

Stourie profile image
Stourie

My next door neighbour was putting on weight something dreadfully and the doctor sent him to a sleep apnoea clinic. He was then given a "mask" to wear at night and he sleeps better now. He had gone from about 20 stones up to over 30 but after about a year and doing nothing different apart from wearing the mask he has lost about 9 stones in about a year.

Jo xx

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