FRUSTRATION WITH HYPOTHYROIDISM & ENDOCRINOLOGI... - Thyroid UK

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FRUSTRATION WITH HYPOTHYROIDISM & ENDOCRINOLOGIST/PRIMARY CARE DOCTOR

19 Replies

I'm new here & in the USA, but I LOVE the U.K. In another life I lived there! I was thrown into hypothyroidism due to the removal of my thyroid due to papillary cancer. I now feel like I'm between a rock & a hard place. My endocrinologist does not share a lot of information to help me deal with the tired feelings I have now. I've recently had breast cancer & the chemo drug makes me tired too. My primary care dr. wants me to eat oat bran for slightly high cholesterol. My hormone count was low due to eating the oat bran for breakfast. If my endo doctor would have told me this, it would have made my life a bit easier. Is there a place where I can get a list of all the foods & vitamins/minerals that interfere with the absorption of my thyroid hormone? And any ideas of substitute breakfasts? jeanueusa

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19 Replies
Saggyuk profile image
Saggyuk

You should be able to eat anything for breakfast as long as it's an hour later than taking your thyroid meds :-)

Vitamins and supplements should all be taken away from meds - 2-4 hours depending on what it is.

in reply to Saggyuk

Thank you for this information. As I stated, my endocrinologist is absolutely useless. And now that I'm on a chemo pill for breast cancer, my fatigue symptoms

have multiplied. Perhaps I was stupid and naive going into my thyroid surgery, which BTW was 8 years ago. When I was hyperthyroid, I had so much energy and I'm just not coping well with being tired all the time. However, my endocrinologist just shrugs it off. In other words, "Just deal with it!".

Saggyuk profile image
Saggyuk in reply to

Yes they often are like that unfortunately - the only way you'll get better is to read as much as you can about thyroid and basically manage it yourself. Get print outs of all your results and post on this website and people here can advise if optimally medicated.

Also get tested for Vit D, Vit B12, iron (ferritin) and folate as many of us are deficient in these.

Do you have any stomach issues - this is good to resolve too.

in reply to Saggyuk

My Vitamin D3 was low, but now I have that under control. I have started taking B12. I'm past menopause so do not take iron as it does bother my stomach. Will look at my last blood work and see about the folate. I do take probiotics.

Saggyuk profile image
Saggyuk in reply to

It might be worth posting your vit results and state what dosage are on as what is classed as normal with the blood tests is often far from normal and you will need certain strengths of supplements to deal with a deficiency. If you need iron, you should take it and many of us are low in iron but there are ways to help the way it bothers your stomach. Ferrous sulphate tends to be the worst but ferrous fumerate is easier on the tummy. Failing that, floradix. You should take with vit c which helps with the stomach issues. Taking it with porridge helps me too. However, iron is one you shouldn't supplement without testing as too much is just as bad as not enough.

Your need these all to be optimal to be able to use thyroid effectively.

greygoose profile image
greygoose

Take your levo on an empty stomach, with a large glass of water and leave at least an hour before eating or drinking anything other than water; two hours before taking other supplements or medication; four hours before taking calcium, iron, vit D or oestrogen - and I, personally, would recommend leaving six hours before taking magnesium.

Your high cholesterol will be due to your low thyroid hormone. As they rise, your cholesterol will drop.

in reply to greygoose

You all are great! I do take my levo on an empty stomach & have been eating 1/2 hour after taking it. Will increase the time. Will now wait 2 hours before taking my other drugs. I have been taking my vitamins at night with supper. I take propranolol at night too BUT it is now elevating my fasting blood sugar in the morning. Did not know that the thyroid hormone would raise my cholesterol. The endo has me on 125 mg of levo. I had to fight with her to get her to raise it to that. She had me on 112 mg and I felt horrid. 2017 did not start out like I had hoped as I was diagnosed with breast cancer on Dec. 28th. Happy New Year? On the bright side, my ductal carcinoma was less than 1 cm & was removed along with 4 lymph nodes & there was NO cancer in the lymph nodes. I will be on anastrozole for 5 years & I do not need radiation of i.v. chemo. Thank God! I know I'm very lucky, but its just frustrating when I cannot get my endo to really supply me with information. She has always been like this. I'd change doctors, but all of the endocrinologists in my town are in the same group. Thank you again for your reply.

greygoose profile image
greygoose in reply to

Endocrinologists don't really know very much about thyroid. They are usually diabetes specialists. They just try to wing it with the thyroid.

in reply to greygoose

This is very cheery news!! HG Actually I've been saying that all she does is read my blood work results. A nurse or PA could do this. When I was first diagnosed with overactive thyroid, she did do an ultrasound and found the little nodule and a benign cyst. BUT ANOTHER doctor in the practice did the fine needle biopsy. Then she sent me to the surgeon, so she really has not done a thing.

greygoose profile image
greygoose in reply to

Doesn't surprise me in the least.

in reply to greygoose

It does amaze me. It seems that EVERYONE I talk to says the same thing about their endocrinologist. Are these people who when in med school had no bedside manner so they became an endocrinologist? HG

greygoose profile image
greygoose in reply to

No, they're people who find diabetes 'sexy' - by which I understand 'lucrative' - and so made it their speciality. Very, very few doctors are interested in thyroid, for some reason, and therefore there are no thyroid specialists.

So, for want of a real specialist in our field, doctors send us to endos (diabetes specialists) who've had a brief glance at the rest of the endocrine system, so that they can qualify as endocrinologists, and believe that the thyroid is easy peasy : just give levo until the TSH moves back into range. Job done!

in reply to greygoose

I TOTALLY agree with you on this. The ONLY reason I have continued to go to her is so that she will do my tumor maker blood test. However, since I am now going to an oncologist for my breast cancer, I will ask her if she can do the tumor marker test. And I know my primary care physician would give me my levo. And I firmly believe that had the endo not given me propranolol for palpitations prior to my thyroid surgery, my fasting blood sugar in the am would not be slightly elevated. I do take 1 500 mg Metformin ER and the rest of the day my blood sugar is normal, even after eating. I cannot take the propranolol in the am due to the thyroid hormone pill.

avocadopeardrops profile image
avocadopeardrops in reply to

Are you taking any vitamin B12 with metformin?

in reply to avocadopeardrops

Yes, I've been taking it around lunchtime.

greygoose profile image
greygoose in reply to

You can take it two hours after the levo.

in reply to greygoose

This is good to know that I can take it 2 hours later. Thank you.

SlowDragon profile image
SlowDragonAdministrator in reply to

Propranolol slows conversion of T4 to T3. In fact is standard treatment option when someone is hyper

Why are you taking it? If it's for blood pressure can you swop to something else

in reply to SlowDragon

I will ask my gp about this. As I said before the endo doctor just bypasses everything. On my last visit to the gp, I did not get to see her and a new doctor saw me and he asked the same question. I will definitely see about swapping this out as I do have high blood pressure. Thank you.

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